Aundaray Guess
HIV/AIDS Advocate
The Graying of HIV
By Aundaray Guess on July 2, 2014 11:52 AM | No Comments
I was recently asked to sit in on a HIV support group which is targeted to men 50 and above. I felt this would be a great opportunity to listen in on a community I would eventually be joining. The men were older than the 50 mark and ranged in age from mid to late 60's, so in a way I felt I wouldn't be able to identify with their stories. As they spoke, not only did I identify but also realized I would soon be joining a community I have come to name the "Grey Invisibles".
'Grey Invisibles' is a tag I created to identify gay seniors who fly under the radar especially when it comes to HIV prevention and advocacy. It may seem phrasing a community the color 'grey' is stereotypical, yet when we reference our elders, the color grey is mentioned. Truthfully, our elders are anything but the dullness of grey and are more in aligned with the colorful life they bring to the world.
Sadly when it comes to seniors, especially in the gay community, they are not asked to sit at the table. It's often our gay elders who are seen as no longer having value and although their work in the community is appreciated, they're told to now step aside. When HIV statistics are branded about, a large focus is placed on the young gay community, justifiably so. Yet those same statistics report how gay seniors are facing the same crisis as rates of HIV among seniors are increasing. According to data from the CDC from 2008-2010 it shows that there has been a steady increase in HIV infections in older Americans, 65 years old and older. About 10-11% of newly diagnosed US HIV cases per year occur in older adults. That comes out to about 5,000 to 6,000 new cases of HIV in this age range per year.
The men in the HIV support group highlighted how their lives are impacted with a HIV diagnoses. Their stories are similar struggles the young generation communicate themselves. If you listened you would hear the same difficulties in forming relationships and the fear of rejection based on their status. Tales of managing their medication and the sometime complexity it presents. You would be privy to conversations of men wondering what the future held for them as a person with HIV. And yes, you would hear about love and the desire to still be wanted. To be embraced and share in the warmth of someone special who accepts you, HIV and all. But because they are 'Invisible' their stories falls on deaf ears.
What we fail to realize is the seeking of affection never ends and because of this unmet desire, the elder positives find themselves part of a growing HIV epidemic. Partly because today HIV prevention efforts don't target the LGBT senior population as a belief is held seniors are not participating in sex. Not only are seniors having sex, they also have multiple partners which calls for prevention efforts. In addition most gay seniors receive inadequate health screening for HIV if they receive it at all. This is compounded by the discrimination senior's face in the health community based on their sexuality and age.
To make gay seniors visible and part of the HIV discussion, some key steps can be made:
1. Create visual HIV/Prevention messages targeted exclusively to the elder community
2. Enforce inter-generational participation within HIV agencies and start inviting the aging community to have a seat at the table.
3. Stop placing gay seniors as an afterthought and include their voices at the beginning of HIV planning initiatives.
4. Recognize elders are continuing to have sexual relations and need the same prevention tools available to the younger generation
5. Provide education directed to health officials to have a greater understanding of the LGBT aging population along with the challenges people of color aging community faces
As stated before I and others will soon be considered one of the aging communities. I know with all my contributions within the LGBT community, unless we start including our gay elders, my voice will be irrelevant. I have consistently worked to have inclusion of elders when it relates to my work in the LGBT field. Recognizing the silence they face I challenge the younger community to not simply respect your elders but also recognize they are worthy of our continued attention and most importantly, they are still very much a part of our community.
Although I gave some tips on how to include gay elders in HIV prevention, are there any efforts that can be highlighted. Love to hear what is working.
See also: The Graying of Aids
Help Wanted: Unemployment and HIV
By Aundaray Guess on May 20, 2014 7:23 AM | 1 Comment
Times are tough in this country for everyone (well maybe not for the 'one-percenters') but the rest of us continue to endure a tough economy. Living with HIV can sometimes be difficult enough but the added uncertainty of unemployment sometimes makes it seem life is working against you. I lived through this emotion myself as the organization I worked for faced decreasing revenue. I was a great performer but when cuts had to be made, my position unfortunately was affected. Although I'm a resourceful and determined person, I didn't know how I was going to get through the storm. This new territory didn't have a road map or clear directions on how to navigate it. I've always had a job since the age of 13 so I didn't know what to expect.
Questions racing through my head were scattered and came from a place of fear. Will I be able to survive on unemployment? Will I have to deplete my savings? What will people think of me? Am I failure? Will I ever find another job? How? When? Will I only be able to afford second hand clothes? Oh yeah, what about my HIV? Yes for me, my health which is my top priority, all of a sudden fell to the bottom of the list. Facing a new first of living with HIV and being unemployed, I didn't know if or how I could manage?
When you're suddenly unemployed your HIV care can rapidly become a lesser significance as you shift into survival mode during your jobless state. As much as I take care of myself, I slowly fell into the trap of not properly handling my health. Between looking for a new job and sending out my resume I unknowingly started to develop bad habits. I began to accidently miss medication dosages or taking them at the wrong time of day. My physical activity suffered as I didn't have the motivation to work out. And if I went, my mind was so distracted with my jobless situation; I would put in half the effort. At the time I failed to realize the impact it would have on my health, but as time went on I started to see the negative results of my inactions. Instead of gaining weight I started to lose weight as the stress started to take its toll. It was hammered home to me when I visited the doctor and he informed me my t-cells were slightly lower since the last time I came in.
Sending resumes after resumes I thought the phone should be ringing off the hook. But it continued to give me the silent treatment. Having a hopeless feeling, I would sometimes tell myself I needed a nap which would last for the rest of the day. Or sometimes I just wanted to crawl back to bed and pull the covers over my head and ride out the anxiety wave.
My fallback in life has always been my support system yet being unemployed; I shut everyone out on my current circumstance. Shame allowed me to not inform my friends I didn't have a job. I think my shame, sometimes so prevalent; I even gave power to what strangers thought about me. Wondering if they were questioning why I was home and not at work. At the moment blind to the fact I was not the only able body person who was home during the work hours. Rather than share the news with friends and family, I painted a perfect picture of bliss as I pretended everything was okay. To not share that aspect of my life meant allowing myself the chance to endure my situation alone.
The thought of receiving unemployment was humbling as I saw it as a handout. When I realized I was simply taking advantage of all the monies I placed into it when I was employed, I stopped myself thinking in such a negative way. I was also fortunate as I'm currently on my partner's health insurance so I knew my health coverage would be uninterrupted. For others who have HIV, they may not be as fortunate as they are now managing their HIV status with no health coverage. They may also fall into the purgatory of the twilight zone where they make too much money for city services yet don't have enough money to obtain coverage through COBRA. For some with HIV, HASA (HIV/AIDS Services Administration) used to be an option but with recent changes, one has to have a certain t-cell level to be approved. You have to find a solution fast as once you begin to collect unemployment, the clock starts ticking. It's for a short period of time and because Congress is in a stalemate, there's no extended benefits. I ask again, how does one manage?
Although being unemployed can be a temporary situation unfortunately your HIV status isn't. Despite your current situation you must still maintain a lifestyle which doesn't allow your HIV to rear its head. I'll share what worked for me as I faced being out of work and giving attention to my HIV status.
1) 1) Create a schedule- If you're a structured person, having free time will be one of the hardest things to deal with. Suddenly having no structure will leave you feeling like you have no purpose and make remembering important details, such as taking your HIV meds on time, difficult. Because your HIV medication routine is on a schedule it now can fall to the wayside which will have an effect on your health. Irregular dosages can result in decreasing t-cells and/or you could become resistant to your medication.
Advice - As much as you can, maintain a schedule similar to your job. Go to bed as you usually do and in the morning get dressed, avoiding the desire to stay in your sleepwear. You still have a job, which is to find a job and approaching a job search with a focused mindset will be beneficial. Allow yourself to clock out of job searching the same time you would if you were working. Your life shouldn't be a 24 hour search for employment. This will help you develop a routine which will involve the integration of your medication. A consistent schedule will assist in not missing dosages.
2) Get Outside- While conducting your job search, make a full effort to not do it at home. Along with distractions, getting out the house helps with any onset of loneliness. For me, being in a social environment propelled me to not dwell on not having a job and instead I gained focus in finding a new job. The disadvantage of staying in your home is it provides plenty of time to develop a depressive mood. HIV and depression is a bad combination as it affects not only your health but if you've struggled with addictive behaviors, they can resurface and be acted on. Isolation can also be a negative contributor to your health and should be avoided.
Advice- Try to find a coffee shop or library where you will feel comfortable to job search. If it's warm and you don't need wireless access consider creating your cover letters in the park. The key is to create a separation from your home so it doesn't feel like a workspace. Allow yourself to have lunch dates with friends. Continue to be sociable and stay connected. The goal is to deter depression and not allow loneliness to be your norm.
3) 3)Stay physical- Staying healthy is important, especially when it concerns your HIV status. Staying fit will help reduce the stress of not having a job and contribute to a better overall well-being. Along with holding depression at bay, it will also encourage you to not allow your healthy diet go amiss. The benefit of working out increases a better sense of self and contributes indirectly to your t-cell/viral numbers.
Advice- Don't consider going to gym or working out a luxury. Staying physically fit is an important part of your life and helps to reduce the stress and anxiety of being unemployed. It also has the benefit of giving you a greater positive outlook not just on your job search but also health.
4) 4) Don't keep it a secret- We often tie our personalities to our job, so when we leave a job it usually attaches itself to our self-worth. When you begin to accept your job is what you do and not who you are, you'll have a lesser feeling of shame. Shame can prevent you from embracing your current support system and have a negative impact on the care of your HIV. It also stems the opportunity to network and access individuals who may have knowledge of other employment opportunities. The key to finding a job in today's market means networking as the old days of sending in resumes can result in failed efforts. Use your friends and online mediums such as LinkedIn to its full advantage.
Advice-Reach out and be honest about your situation. Create two separate groups, one can help support you with your HIV and emotional care and another group can help in your job search. Everyone doesn't have to know your situation but the more people who know, the more who can assist you. Also share with your doctor. You may endure stress which will probably affect matters such as sudden loss of weight and/or appetite. In addition if you're now dealing with depression, a proper temporary treatment plan can be initiated.
There are other areas of being unemployed and having HIV which hasn't been fully discussed such as loss of medical coverage and tips on finding a new job in this technology age. I would love to hear from others who have HIV and if they have endured unemployment or are currently unemployed and what has worked for you.
I'm happy to report my journey of unemployment is over but nothing is always for certain. So even if I find myself without a job again, I can fall back on my tips and still come out a success. I can also find comfort of knowing after my recent experience I have to ability to not let any situation alter the way I approach my health. That's a job I can't be fired from.
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Coming Back From Zero
By Aundaray Guess on April 16, 2014 11:12 AM | 2 Comments
Medication adherence is a commonly used term to describe the ability to consume your medication at the appointed time and the right dosage. Although I was fully aware of this phrase the meaning didn't have an impact on me until I witnessed the consequences of not sticking to a consistent regiment. You can say I was provided this lesson when I skipped too many dosages and eventually found myself with t-cells not too far from hitting the single numbers. As an African-American I was in a group of those who didn't and couldn't adhere to medication for my HIV. Seen as one of the biggest obstacles to helping one live a healthy life, it's also one of the largest barriers for many and at one time also me. As I have progressed and lived a healthy life with HIV I still have to remind myself the lessons I learned by being non-adhering.
I was never a pill person. Even before my diagnosis I would have much rather rest my body than take an aspirin for my headache. The pill also represented a weakness and that I needed assistance. I always considered myself a strong person and could handle my own. I wanted to heal without the aid of something made in a lab. So when I was diagnosed with HIV I knew it was going to be a struggle for me. It was one of the reasons I didn't commit to seeing a doctor on a regular basis. Since I wasn't placing myself on pills what need was there for a doctor. All he was going to do each visit was to confirm that I still had HIV. I told myself as long as I eat healthy and take care of myself I can manage on my own.
I knew I was playing with my health but the idea of swallowing a pill for the rest of my life was not appealing. I was only 19 when diagnosed so that meant a long road ahead. I was also concerned about what any long term damage I would do by taking pills for so long. Would my body be able to handle it and would my liver or other organs pay for my decision? I wasn't a conspiracy nut like some people are. I didn't think the meds were designed to harm me or make it so I would never get better. I simply felt I didn't have the will or the desire to take medication for a lifetime.
My change in thinking came when one year I was constantly sick. I started the year with bronchitis and ended the year with bronchitis. It was then I realized my method of avoidance wasn't working. My doctor who I was always running away from confirmed it for me when he told me that my t-cells were starting to dip below fifty and heading to zero. Someone without HIV has a t-cell count of 1500 and here I was on my way to zero. That's when the fear set in. In a weird way it was okay for me to have HIV as long as I didn't have a diagnosis of AIDS. AIDS was for others who truly didn't take care of themselves. AIDS was Rock Hudson with sunken skin and hollow eyes. So I was okay with HIV, but my reality was realizing since my t-cells had dipped below 200 I was now classified as having AIDS.
I had AIDS.
I was defeated and felt like I was on my final chapter of life. I felt that once you had the scarlet letter A scribed on your records that there was nowhere else to go but down. I gave in to the doctor and stopped fighting him. I allowed him to prescribe me HIV medication. It was only a square piece of paper he handed me, but it felt like an anvil. It felt heavy. But I also told myself this was my life preserver from sinking further than I wanted to.
The kaleidoscope of color and sizes intimidated me. The instructions were just as puzzling. It was a brain teaser as I had to remember to take some pills twice a day, the others once a day and the other with food one hour after eating. It felt like the math class I always skipped when I was in school. I didn't know it was going to be so complicated. Then there was the matter of how did I keep it hidden so if someone visited my home they wouldn't discover my secret. This in itself was another reason I didn't want to be placed on meds.
My will was tested when the side effects came. I heard horror stories from others sharing their experience, which added to my reluctance to taking medication. People shared stories of nausea, cramps and constant diarrhea. In the scheme of things I got off pretty lucky as the only effect I had was loose stool. Eventually that went away and so did my opposition. I was starting to feel better and my doctor confirmed it for me many months later when I went in for my lab results. My t-cells were inching up. He was still concerned why my levels were rising so slowly. When he asked me if I was missing dosages I looked him in the eye and lied. I said no.
The truth was I was taking many holidays. Holidays refer to a period when you stop taking medication. My holidays were scattered and incomprehensible as routine involved me taking just the morning dosage and missing the evening or vice versa. And some days I just wouldn't take it at all as I was tired, out later than I thought or just didn't feel like making the effort. My unspoken reason was suffering from an untreated depression that made adhering to my medication unrealistic.
My punishment? I eventually became resistant to not only my medication but to others class of HIV meds. There was nothing the doctor could do for me as anything he prescribed would have no effect. My subconscious spoke to me and simply said, "Well this is a fine mess you got us in" To add to my bad news I was reprimanded by a nurse who had befriended me and told me she would rather have me not take the pills than to take them irregularly.
My stubbornness was affecting my life and although I had the tool I was being reckless. I had to get my act together and if there was something that can help me, I should stop complaining and do what I needed to do.
Medication adherence is an important issue when discussing HIV. Resistance to taking HIV medication can have an impact on your life and health. The discussion should be based on the fear people have and how to provide reassurance and education on the importance. I would state that taking medication is harder than having the virus as the HIV can remain static and not affect your day to day life but medication is an action that requires thought and commitment.
My advice to anyone having inconsistency it to first realize you're playing with your health and when that realization hit you, find a way to create a realistic manageable schedule. Look at your life and see what's blocking you. For me it was the depression that I had to address and get it out the way. Also talk to your doctor and come up with a regimen that works for you. Since my diagnoses new pills have been introduced and can afford someone to take one pill. And any experience of side effects should be quickly discussed with your medical provider as they want to see you healthy and won't keep you on a pill that's making you sick and causing you to miss dosages.
I was fortunate when medication was finally introduced that I could take. I felt that this was my second chance to get this right. I've since dedicated myself to being devoted and my reward is seeing my t-cells climb. Where I was close to zero I can now say that I'm at a healthy number of 632. That's a long way from zero. Although I take the daily medication I still don't lose sight of my ability to take care of self, it's just that I have a little help. And that's okay.
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Springing into Love
By Aundaray Guess on April 1, 2014 11:56 AM | 2 Comments
The arrival of spring signifies many things. It means out with the old and in with the new which can involve tossing out old clothes, shedding winter pounds or finally putting the television remote down and heading outside. This is also the season when we're open for something new in our lives. We're looking for love.
But how do we find love?
This is one of the most difficult questions in the world for many to answer. Some have it easy while others may resort to extreme measures such as giving their heart to someone unworthy; settling for whoever comes along first or attaching ourselves to another so mismatched just to change our relationship status from single. I'm going to add another layer of difficulty. How do you find love when you're HIV positive? How do you make the effort, despite what you have inside of yourself, make that move to find someone? This question is an important one as love is a universal feeling we all want to experience. Finding someone to love is a task which can seem insurmountable in any circumstance. Adding the stigmatization of the disease and feeling less valued, makes one ask; why bother?
I speak from experience as I've lived with HIV for the past 28 years. When told of my status, the two things I immediately questioned were; when I am going to die? The second was, will anyone ever going to love me again? At the time how people viewed HIV was entirely different from today. HIV was such an unknown entity in 1986, the year I learned about my status. There was such a huge public fear which resulted in ostracizing people from their homes and sometimes communities. My fear was wondering if my HIV status was making me next on the list of a witch-hunt. I decided I didn't want to be emotionally hurt and the best way to avoid such pain was to not let anyone in. My only option it seemed was to build a wall around my heart. A wall so strong it prevented people discovering my HIV status and also had the ability to keep anyone from getting close.
As the years past I was finding out hiding behind this wall wasn't so fun after all. Yeah no one could do harm but at the same time I was lonely and miserable. Without realizing it, depression had made its way through the cracks and kept me company. Was I ever going to find love?
Luckily times have changed and many living with HIV negative now find no problem loving someone with HIV based on an increase understanding of the disease. I'm a personal witness to this as I'm now in a relationship with a person who is HIV negative and loves me unconditionally. I would never been able to meet this person if my walls had remained up. By removing myself from a place I thought would keep me safe, my reward was finding love. Placing a wall up is easy, tearing it down is hard. To receive love one must learn, brick by brick, how to step into the faith someone is out there waiting.
These are some suggestions which helped me tear down my wall
1) Do it for you. The first thing one must learn is to give permission to love self. If you're moving from a place of isolation, don't do it for anyone else but you and your happiness. You will never learn happiness if all your actions are simply meant for the benefit of someone else. Know you're worthy and embrace the feeling. Like the commercial states, 'Love the skin you're in.' It's so hard for someone to love you when you don't give yourself the same love-so start with you first.
2) Stop seeing yourself as a negative. When we look in the mirror we're always looking for what's mistaken. It may be a hair in the wrong place or a glance to see if our waistline has expanded. No matter the reason, we're looking for the bad. And sometimes we look in the mirror an seeing only HIV looking back. As a task start to look in the mirror and find all the great things about you. It doesn't have to be physical attributes but also features of your personality people can't see. Discover affirming words about yourself and redefine who you are. Embrace those words and the image looking back. So no matter what happens to you during you know how wonderful you are. What are your words of affirmation?
3) Accept you have HIV. I know this may not make sense but sometimes we're in so much denial and won't accept our HIV status. I used to stick my head in the sand and act like it didn't exist. It was my own showing of shame. By coming to terms with your HIV you can start to move forward and make the positive changes which remove you from the darkness of denial and place you into the light of truth. It's hard to start any relationship when you can't be honest with yourself. Shame is such a strong destructive device which can hold the strongest person back. For whatever reason you are HIV positive but you're still a good person. Don't carry shame based on your situation; you're stronger now and can live the best healthy and happy life possible. This is not minimizing the impact of having HIV but to create a greater awareness your identity is not a three letter acronym.
4) Don't let past rejections make you one who rejects- When we have someone walk away from us for whatever reason our natural response is to close ourselves off. We develop a mantra which states, "Never again". When you do this the other person win as they go off and find happiness and you're left alone with resentment. I personally have experienced so much rejection around my HIV status, it took me a long time to realize it was never about me but spoke more to the other person. Flip the script and realize if someone doesn't want you for you, they are intimidated by your strength. If anyone rejects you, they've just made room for someone who loves you to fill. This isn't a mind game but something you have to believe. Everyone we meet is not necessarily meant to be in our life no matter how compatible. Don't morph into the one who now rejects. Always strive to be the one who loves.
5) There's no King Arthur. Sometimes we wait for the person who has the strength to pull the sword from the stone and tear down our walls. You will be sadly disappointed and remain in a place of loneliness if it's your litmus test. While waiting for the shining knight you're probably missing out on the many suitors who have sincere attraction to you but because you made loving you so challenging you're missing out. You've created a long laundry list of qualities you don't possess yourself but expect others to have. Be realistic and accept sometimes your Prince Charming is right in front of you.
6) And last-There's not an app for everything. I don't care what anyone says but apps like Grndr and Adam4Adam are strictly for sex. Period. If anyone says they have found true love they are not the norm. Solely depending on these apps will set you down the long road of bitterness as you'll become convinced all men have the same characteristics on the mobile app. Too many of these encounters; good or bad, you'll develop the mindset that everyone simply want sex or start believing any form of a relationship is superficial. What happens next? Yep, up goes the wall.
Declare you're ready. You're ready to tear down your wall and find the relationship you're meant to have. Finding love won't happen overnight, or the process of tearing down your defenses. But the reward is so great when you finally say to yourself, I'm ready.
As I enter my 15th year with my current soul mate I'm so glad I didn't deny myself the ability to love. It took a deep understanding of my life with HIV but in general it took me not hiding behind a wall. Experiencing self-love stopped blocking the full life I desired and helped me to find love.
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Family Secret
By Aundaray Guess on February 4, 2014 5:31 PM | No Comments
One of my sad truths that I don't really share is my relationship or perhaps my non-relationship with my family. Before I begin, I have always had a certain feeling about people who in the public drag others on social media, so I state that is not my reason. Instead I use it as a frame to share how by not being close to family, matters such as my HIV status comes into play.
With the recent passing of the holiday's it has now become a norm for me not to receive a call or any type of acknowledgement. This past holiday wasn't different and instead of being sad I reasoned that at least they were being consistent. The one thing that did briefly come was the sadness that despite thinking I was close with everyone, the feeling wasn't mutual. I know I could have simply picked up the phone and reached out but frankly my whole life that's what I've been doing. I'm the one who has made the call or showed up unexpectedly at the front door to say help. I'm the one who has come running when there was a need and being across country I continued to be there physically. So although I could have called you finally reached that point of not wanting to be the giver. Even recently I received an email from a family member and thought maybe they were catching up. Instead it was the usual reason for reaching out, for financial assistance. It has worked in the past as I reasoned by helping they can see I want to be part of the family. It took a while for me to realize money doesn't buy love
In the early years of having HIV I was still alone in the battle despite them knowing my status. I remember doing a test where I stopped reaching out to them and wanted to see who would reach out knowing I was struggling with this new virus. I was the one who was surprised as there was no communication from any. It was that 'Wow" moment as I thought, "I could be here on the floor unable to get up for any reason and no one cared, at least my family". It's hard to wrap my head around it as when we do see each other in person we're having the greatest time, with good conversation and filling the room with laughter, but once we part the silence fills the space and goes back to being strangers.
I once asked my sister why she didn't reach out and she let me know that they expect me to since I was so good at it. It was then I realized it was my job and I shouldn't expect the feeling to be reciprocal. For that reason I now keep my life with HIV quiet as I feel they won't be the support I need although knowing with their support it'd be a great addition. And not that I want them to simply see me as the big/little brother with HIV, but knowing it's part of me I want them to be there when I want to share.
Without sounding like I'm telling anyone what to do, if I could give advice I would say don't try to use your HIV status as leverage for someone to love you. I say that as knowing we weren't close I thought by letting them know my big secret that it would draw them in. I built myself up to say this will be the impetus for change. Scary as it was to share it was for nothing as I didn't get the results I was looking for. My lesson was using my status as a tool.
Living with HIV a person sometimes wants to use it to create that closeness. In my case it was with family. For others it may be a partner who shows little interest in you or it could be your way of trying to save a relationship that was never there or because of your denial, was over a long time ago. It also has created in me a song that says, 'I don't need anyone'. Even though I am now partnered I still find myself in moments where I feel like an orphan and don't want to depend on anyone. Having HIV this is a bad idea as we all need support but you can't help going to that feeling of being a loner after all it is safe and you won't get hurt...again.
I don't want to say that my relationship with my family is over but the truth is the truth. If they didn't talk to each other maybe it wouldn't hurt as much but knowing among each other they are a family and it's just me who's not in the loop is discouraging. In sharing this I'm not hoping to create something that is not there. I'm also sure I will get advice saying I don't need them or family is what you make with strangers. I know that all to be the truth but there is still those small quiet moments when the hurt peeks in the back door and before the hurt makes itself comfortable, you close it tight again.
So that is my story and as I continue my life surrounded by people who love me instead of holding out for arms that are not there for me, I'll embrace the ones that are there. Even with my struggles with life, and that includes my HIV status, instead of being bitter I hope they know despite current circumstances I love them. And perhaps this is my way of reaching out as it's my job to do. And in my open honesty I can make peace with my family secret.
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Life's Lesson With HIV
By Aundaray Guess on January 21, 2014 5:02 PM | 5 Comments
As I enter my 28th year of living with HIV I have to say that I have learned some valuable lessons along the way, some good and some bad but all my experiences have happened for a reason. The thing is that while you're in it you don't know that. It's not until you get from out the storm not only do you discover why you went through it but you recognize your strength for all you endured. I'm thankful I didn't come away bitter and accept all the new traits now part of my building blocks. So as the New Year's arrives and we start a new chapter I reflect on my experiences and share the 20 lessons I've learned about living with HIV.
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1) I've learned that you're either living or you're dying and despite what you heard about HIV it's not a death sentence. Yet there was a time when I simply stopped living and settled on existing. I had to recognize we all are going to die, that's a fact but until that day how will I live with the life given to me. You're either like the zombies in the TV show, The Walking Dead, walking in an aimless direction or you're taking each day as a gift and cherishing it
2) I've learned the people who have rejected me because of this disease have missed out on having the privilege of knowing such a strong individual. They must be scared of that strength and their decision is something they have to own as I embrace everything about me. And in those lessons I've learned that anyone who has rejected me has simply left room open to be filled by someone who will accept me for me
3) I am beautiful. As simple as that.
4) I've stopped asking 'Why me" and started to understand "Why me' as I have helped others to live with this disease by breaking the silence and talking about HIV. I didn't know at the time I was someone else's gift as through the years people have been made to feel less alone as they listened to shared experiences.
5) My doctor is my friend and if he's not then he has to go. Just because he/she wears the white coat and has the degree we're in this together. At one point I thought I had to submit to everything he prescribed or said but learned that my voice is just as strong as his. So if it's working, then keep it strong but if it's a one sided relationship then he/she has to go.
6) When I used to complain about taking medications a nurse gave me great sound advice. I was hoping for sympathy but she served me a spoonful of hard love as without blinking she told me, "If you have something that's saving your life and its working stop complaining and take the damn pills." Lesson still appreciated today.
7) Start dreaming again.
8) If you're worried about anything killing you just try being best friends with your anger. Having this disease I have had many opportunities to be angry but after walking that walk I learned quickly it wasn't getting me nowhere. Anger strips you down from the inside and clouds your dreams. I accepted that upon hearing my status I had the right to be anger but for me to be well I had to not let my anger guide me.
9) I've learned its okay to cry but to not let those tears create an ocean that I can drown me. Along with anger, tears will come but at a point I had to wipe them away and start heading back to shore.
10) Give myself a hug everyday
11) Sex is still good
12) Stigma is a two way street and don't assume everyone will reject you because of your status. Yes stigma is real and people do inflict it on those who are positive but sometimes I have to recognize when I'm handing out my own dose of stigma. In this lesson I had to learn that not everyone who is negative is ignorant about this disease. This was a good lesson for me to learn as it helped with disclosing and most importantly it helped me in relationships whether friendly or intimate.
13) I'm more than HIV. It seemed that with the doctors, the pills and condoms shoved in my face HIV was all I would ever be. But in thinking that I wasn't allowing myself to see the fullness of who I am. I may write and speak about HIV but the one thing I tell myself is not to limit life to a three letter word.
14) I've accepted where people are in their HIV treatment and what works for me won't necessarily work for someone else. When handing out advice I have to check myself and accept that my treatment was designed for me and people react to things in a different way. So whether it's advice, the way I keep track of taking my medication or anything related to my HIV, it's mine and may not work for others. So I keep my judgments to myself.
15) I've learned as I approach my 28th year of living with HIV that it's not a competition when others share their length of time. The one secret of those living with HIV is sometimes we play a one-man-up game where we trump others with how long we've been positive. We show our battles scars as if having HIV is a competition. It's done in a non-malicious way but if anyone wins we all do for being able to proudly state how long we've been living with this disease is the true prize.
16) I learned that whether it's my cd4 count, my weight or viral load- to heed the numbers but not let the numbers dictate my state of mind. Not saying the numbers are not important but developing anxiety around your numbers is not good. I learned to celebrate the good numbers and don't stress if they will fall. Just keep doing what I'm doing. And if they're dropping then I have to look at stopping what I'm doing that's probably causing the numbers to drop
17) I'm not being punished by God or enduring any other revenge.
18) I can still cross oceans
19) Drinking chocolate milk helps the pills go down easy
20) I've learned to be open and accept anything good or bad that comes my way. And as I step forward even if there is no cure I know that my life will be the best one I can make. So I welcome my next milestone and embrace this journey we call life!
HIV/AIDS Advocate
The Graying of HIV
By Aundaray Guess on July 2, 2014 11:52 AM | No Comments
I was recently asked to sit in on a HIV support group which is targeted to men 50 and above. I felt this would be a great opportunity to listen in on a community I would eventually be joining. The men were older than the 50 mark and ranged in age from mid to late 60's, so in a way I felt I wouldn't be able to identify with their stories. As they spoke, not only did I identify but also realized I would soon be joining a community I have come to name the "Grey Invisibles".
'Grey Invisibles' is a tag I created to identify gay seniors who fly under the radar especially when it comes to HIV prevention and advocacy. It may seem phrasing a community the color 'grey' is stereotypical, yet when we reference our elders, the color grey is mentioned. Truthfully, our elders are anything but the dullness of grey and are more in aligned with the colorful life they bring to the world.
Sadly when it comes to seniors, especially in the gay community, they are not asked to sit at the table. It's often our gay elders who are seen as no longer having value and although their work in the community is appreciated, they're told to now step aside. When HIV statistics are branded about, a large focus is placed on the young gay community, justifiably so. Yet those same statistics report how gay seniors are facing the same crisis as rates of HIV among seniors are increasing. According to data from the CDC from 2008-2010 it shows that there has been a steady increase in HIV infections in older Americans, 65 years old and older. About 10-11% of newly diagnosed US HIV cases per year occur in older adults. That comes out to about 5,000 to 6,000 new cases of HIV in this age range per year.
The men in the HIV support group highlighted how their lives are impacted with a HIV diagnoses. Their stories are similar struggles the young generation communicate themselves. If you listened you would hear the same difficulties in forming relationships and the fear of rejection based on their status. Tales of managing their medication and the sometime complexity it presents. You would be privy to conversations of men wondering what the future held for them as a person with HIV. And yes, you would hear about love and the desire to still be wanted. To be embraced and share in the warmth of someone special who accepts you, HIV and all. But because they are 'Invisible' their stories falls on deaf ears.
What we fail to realize is the seeking of affection never ends and because of this unmet desire, the elder positives find themselves part of a growing HIV epidemic. Partly because today HIV prevention efforts don't target the LGBT senior population as a belief is held seniors are not participating in sex. Not only are seniors having sex, they also have multiple partners which calls for prevention efforts. In addition most gay seniors receive inadequate health screening for HIV if they receive it at all. This is compounded by the discrimination senior's face in the health community based on their sexuality and age.
To make gay seniors visible and part of the HIV discussion, some key steps can be made:
1. Create visual HIV/Prevention messages targeted exclusively to the elder community
2. Enforce inter-generational participation within HIV agencies and start inviting the aging community to have a seat at the table.
3. Stop placing gay seniors as an afterthought and include their voices at the beginning of HIV planning initiatives.
4. Recognize elders are continuing to have sexual relations and need the same prevention tools available to the younger generation
5. Provide education directed to health officials to have a greater understanding of the LGBT aging population along with the challenges people of color aging community faces
As stated before I and others will soon be considered one of the aging communities. I know with all my contributions within the LGBT community, unless we start including our gay elders, my voice will be irrelevant. I have consistently worked to have inclusion of elders when it relates to my work in the LGBT field. Recognizing the silence they face I challenge the younger community to not simply respect your elders but also recognize they are worthy of our continued attention and most importantly, they are still very much a part of our community.
Although I gave some tips on how to include gay elders in HIV prevention, are there any efforts that can be highlighted. Love to hear what is working.
See also: The Graying of Aids
Help Wanted: Unemployment and HIV
By Aundaray Guess on May 20, 2014 7:23 AM | 1 Comment
Times are tough in this country for everyone (well maybe not for the 'one-percenters') but the rest of us continue to endure a tough economy. Living with HIV can sometimes be difficult enough but the added uncertainty of unemployment sometimes makes it seem life is working against you. I lived through this emotion myself as the organization I worked for faced decreasing revenue. I was a great performer but when cuts had to be made, my position unfortunately was affected. Although I'm a resourceful and determined person, I didn't know how I was going to get through the storm. This new territory didn't have a road map or clear directions on how to navigate it. I've always had a job since the age of 13 so I didn't know what to expect.
Questions racing through my head were scattered and came from a place of fear. Will I be able to survive on unemployment? Will I have to deplete my savings? What will people think of me? Am I failure? Will I ever find another job? How? When? Will I only be able to afford second hand clothes? Oh yeah, what about my HIV? Yes for me, my health which is my top priority, all of a sudden fell to the bottom of the list. Facing a new first of living with HIV and being unemployed, I didn't know if or how I could manage?
When you're suddenly unemployed your HIV care can rapidly become a lesser significance as you shift into survival mode during your jobless state. As much as I take care of myself, I slowly fell into the trap of not properly handling my health. Between looking for a new job and sending out my resume I unknowingly started to develop bad habits. I began to accidently miss medication dosages or taking them at the wrong time of day. My physical activity suffered as I didn't have the motivation to work out. And if I went, my mind was so distracted with my jobless situation; I would put in half the effort. At the time I failed to realize the impact it would have on my health, but as time went on I started to see the negative results of my inactions. Instead of gaining weight I started to lose weight as the stress started to take its toll. It was hammered home to me when I visited the doctor and he informed me my t-cells were slightly lower since the last time I came in.
Sending resumes after resumes I thought the phone should be ringing off the hook. But it continued to give me the silent treatment. Having a hopeless feeling, I would sometimes tell myself I needed a nap which would last for the rest of the day. Or sometimes I just wanted to crawl back to bed and pull the covers over my head and ride out the anxiety wave.
My fallback in life has always been my support system yet being unemployed; I shut everyone out on my current circumstance. Shame allowed me to not inform my friends I didn't have a job. I think my shame, sometimes so prevalent; I even gave power to what strangers thought about me. Wondering if they were questioning why I was home and not at work. At the moment blind to the fact I was not the only able body person who was home during the work hours. Rather than share the news with friends and family, I painted a perfect picture of bliss as I pretended everything was okay. To not share that aspect of my life meant allowing myself the chance to endure my situation alone.
The thought of receiving unemployment was humbling as I saw it as a handout. When I realized I was simply taking advantage of all the monies I placed into it when I was employed, I stopped myself thinking in such a negative way. I was also fortunate as I'm currently on my partner's health insurance so I knew my health coverage would be uninterrupted. For others who have HIV, they may not be as fortunate as they are now managing their HIV status with no health coverage. They may also fall into the purgatory of the twilight zone where they make too much money for city services yet don't have enough money to obtain coverage through COBRA. For some with HIV, HASA (HIV/AIDS Services Administration) used to be an option but with recent changes, one has to have a certain t-cell level to be approved. You have to find a solution fast as once you begin to collect unemployment, the clock starts ticking. It's for a short period of time and because Congress is in a stalemate, there's no extended benefits. I ask again, how does one manage?
Although being unemployed can be a temporary situation unfortunately your HIV status isn't. Despite your current situation you must still maintain a lifestyle which doesn't allow your HIV to rear its head. I'll share what worked for me as I faced being out of work and giving attention to my HIV status.
1) 1) Create a schedule- If you're a structured person, having free time will be one of the hardest things to deal with. Suddenly having no structure will leave you feeling like you have no purpose and make remembering important details, such as taking your HIV meds on time, difficult. Because your HIV medication routine is on a schedule it now can fall to the wayside which will have an effect on your health. Irregular dosages can result in decreasing t-cells and/or you could become resistant to your medication.
Advice - As much as you can, maintain a schedule similar to your job. Go to bed as you usually do and in the morning get dressed, avoiding the desire to stay in your sleepwear. You still have a job, which is to find a job and approaching a job search with a focused mindset will be beneficial. Allow yourself to clock out of job searching the same time you would if you were working. Your life shouldn't be a 24 hour search for employment. This will help you develop a routine which will involve the integration of your medication. A consistent schedule will assist in not missing dosages.
2) Get Outside- While conducting your job search, make a full effort to not do it at home. Along with distractions, getting out the house helps with any onset of loneliness. For me, being in a social environment propelled me to not dwell on not having a job and instead I gained focus in finding a new job. The disadvantage of staying in your home is it provides plenty of time to develop a depressive mood. HIV and depression is a bad combination as it affects not only your health but if you've struggled with addictive behaviors, they can resurface and be acted on. Isolation can also be a negative contributor to your health and should be avoided.
Advice- Try to find a coffee shop or library where you will feel comfortable to job search. If it's warm and you don't need wireless access consider creating your cover letters in the park. The key is to create a separation from your home so it doesn't feel like a workspace. Allow yourself to have lunch dates with friends. Continue to be sociable and stay connected. The goal is to deter depression and not allow loneliness to be your norm.
3) 3)Stay physical- Staying healthy is important, especially when it concerns your HIV status. Staying fit will help reduce the stress of not having a job and contribute to a better overall well-being. Along with holding depression at bay, it will also encourage you to not allow your healthy diet go amiss. The benefit of working out increases a better sense of self and contributes indirectly to your t-cell/viral numbers.
Advice- Don't consider going to gym or working out a luxury. Staying physically fit is an important part of your life and helps to reduce the stress and anxiety of being unemployed. It also has the benefit of giving you a greater positive outlook not just on your job search but also health.
4) 4) Don't keep it a secret- We often tie our personalities to our job, so when we leave a job it usually attaches itself to our self-worth. When you begin to accept your job is what you do and not who you are, you'll have a lesser feeling of shame. Shame can prevent you from embracing your current support system and have a negative impact on the care of your HIV. It also stems the opportunity to network and access individuals who may have knowledge of other employment opportunities. The key to finding a job in today's market means networking as the old days of sending in resumes can result in failed efforts. Use your friends and online mediums such as LinkedIn to its full advantage.
Advice-Reach out and be honest about your situation. Create two separate groups, one can help support you with your HIV and emotional care and another group can help in your job search. Everyone doesn't have to know your situation but the more people who know, the more who can assist you. Also share with your doctor. You may endure stress which will probably affect matters such as sudden loss of weight and/or appetite. In addition if you're now dealing with depression, a proper temporary treatment plan can be initiated.
There are other areas of being unemployed and having HIV which hasn't been fully discussed such as loss of medical coverage and tips on finding a new job in this technology age. I would love to hear from others who have HIV and if they have endured unemployment or are currently unemployed and what has worked for you.
I'm happy to report my journey of unemployment is over but nothing is always for certain. So even if I find myself without a job again, I can fall back on my tips and still come out a success. I can also find comfort of knowing after my recent experience I have to ability to not let any situation alter the way I approach my health. That's a job I can't be fired from.
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Coming Back From Zero
By Aundaray Guess on April 16, 2014 11:12 AM | 2 Comments
Medication adherence is a commonly used term to describe the ability to consume your medication at the appointed time and the right dosage. Although I was fully aware of this phrase the meaning didn't have an impact on me until I witnessed the consequences of not sticking to a consistent regiment. You can say I was provided this lesson when I skipped too many dosages and eventually found myself with t-cells not too far from hitting the single numbers. As an African-American I was in a group of those who didn't and couldn't adhere to medication for my HIV. Seen as one of the biggest obstacles to helping one live a healthy life, it's also one of the largest barriers for many and at one time also me. As I have progressed and lived a healthy life with HIV I still have to remind myself the lessons I learned by being non-adhering.
I was never a pill person. Even before my diagnosis I would have much rather rest my body than take an aspirin for my headache. The pill also represented a weakness and that I needed assistance. I always considered myself a strong person and could handle my own. I wanted to heal without the aid of something made in a lab. So when I was diagnosed with HIV I knew it was going to be a struggle for me. It was one of the reasons I didn't commit to seeing a doctor on a regular basis. Since I wasn't placing myself on pills what need was there for a doctor. All he was going to do each visit was to confirm that I still had HIV. I told myself as long as I eat healthy and take care of myself I can manage on my own.
I knew I was playing with my health but the idea of swallowing a pill for the rest of my life was not appealing. I was only 19 when diagnosed so that meant a long road ahead. I was also concerned about what any long term damage I would do by taking pills for so long. Would my body be able to handle it and would my liver or other organs pay for my decision? I wasn't a conspiracy nut like some people are. I didn't think the meds were designed to harm me or make it so I would never get better. I simply felt I didn't have the will or the desire to take medication for a lifetime.
My change in thinking came when one year I was constantly sick. I started the year with bronchitis and ended the year with bronchitis. It was then I realized my method of avoidance wasn't working. My doctor who I was always running away from confirmed it for me when he told me that my t-cells were starting to dip below fifty and heading to zero. Someone without HIV has a t-cell count of 1500 and here I was on my way to zero. That's when the fear set in. In a weird way it was okay for me to have HIV as long as I didn't have a diagnosis of AIDS. AIDS was for others who truly didn't take care of themselves. AIDS was Rock Hudson with sunken skin and hollow eyes. So I was okay with HIV, but my reality was realizing since my t-cells had dipped below 200 I was now classified as having AIDS.
I had AIDS.
I was defeated and felt like I was on my final chapter of life. I felt that once you had the scarlet letter A scribed on your records that there was nowhere else to go but down. I gave in to the doctor and stopped fighting him. I allowed him to prescribe me HIV medication. It was only a square piece of paper he handed me, but it felt like an anvil. It felt heavy. But I also told myself this was my life preserver from sinking further than I wanted to.
The kaleidoscope of color and sizes intimidated me. The instructions were just as puzzling. It was a brain teaser as I had to remember to take some pills twice a day, the others once a day and the other with food one hour after eating. It felt like the math class I always skipped when I was in school. I didn't know it was going to be so complicated. Then there was the matter of how did I keep it hidden so if someone visited my home they wouldn't discover my secret. This in itself was another reason I didn't want to be placed on meds.
My will was tested when the side effects came. I heard horror stories from others sharing their experience, which added to my reluctance to taking medication. People shared stories of nausea, cramps and constant diarrhea. In the scheme of things I got off pretty lucky as the only effect I had was loose stool. Eventually that went away and so did my opposition. I was starting to feel better and my doctor confirmed it for me many months later when I went in for my lab results. My t-cells were inching up. He was still concerned why my levels were rising so slowly. When he asked me if I was missing dosages I looked him in the eye and lied. I said no.
The truth was I was taking many holidays. Holidays refer to a period when you stop taking medication. My holidays were scattered and incomprehensible as routine involved me taking just the morning dosage and missing the evening or vice versa. And some days I just wouldn't take it at all as I was tired, out later than I thought or just didn't feel like making the effort. My unspoken reason was suffering from an untreated depression that made adhering to my medication unrealistic.
My punishment? I eventually became resistant to not only my medication but to others class of HIV meds. There was nothing the doctor could do for me as anything he prescribed would have no effect. My subconscious spoke to me and simply said, "Well this is a fine mess you got us in" To add to my bad news I was reprimanded by a nurse who had befriended me and told me she would rather have me not take the pills than to take them irregularly.
My stubbornness was affecting my life and although I had the tool I was being reckless. I had to get my act together and if there was something that can help me, I should stop complaining and do what I needed to do.
Medication adherence is an important issue when discussing HIV. Resistance to taking HIV medication can have an impact on your life and health. The discussion should be based on the fear people have and how to provide reassurance and education on the importance. I would state that taking medication is harder than having the virus as the HIV can remain static and not affect your day to day life but medication is an action that requires thought and commitment.
My advice to anyone having inconsistency it to first realize you're playing with your health and when that realization hit you, find a way to create a realistic manageable schedule. Look at your life and see what's blocking you. For me it was the depression that I had to address and get it out the way. Also talk to your doctor and come up with a regimen that works for you. Since my diagnoses new pills have been introduced and can afford someone to take one pill. And any experience of side effects should be quickly discussed with your medical provider as they want to see you healthy and won't keep you on a pill that's making you sick and causing you to miss dosages.
I was fortunate when medication was finally introduced that I could take. I felt that this was my second chance to get this right. I've since dedicated myself to being devoted and my reward is seeing my t-cells climb. Where I was close to zero I can now say that I'm at a healthy number of 632. That's a long way from zero. Although I take the daily medication I still don't lose sight of my ability to take care of self, it's just that I have a little help. And that's okay.
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Springing into Love
By Aundaray Guess on April 1, 2014 11:56 AM | 2 Comments
The arrival of spring signifies many things. It means out with the old and in with the new which can involve tossing out old clothes, shedding winter pounds or finally putting the television remote down and heading outside. This is also the season when we're open for something new in our lives. We're looking for love.
But how do we find love?
This is one of the most difficult questions in the world for many to answer. Some have it easy while others may resort to extreme measures such as giving their heart to someone unworthy; settling for whoever comes along first or attaching ourselves to another so mismatched just to change our relationship status from single. I'm going to add another layer of difficulty. How do you find love when you're HIV positive? How do you make the effort, despite what you have inside of yourself, make that move to find someone? This question is an important one as love is a universal feeling we all want to experience. Finding someone to love is a task which can seem insurmountable in any circumstance. Adding the stigmatization of the disease and feeling less valued, makes one ask; why bother?
I speak from experience as I've lived with HIV for the past 28 years. When told of my status, the two things I immediately questioned were; when I am going to die? The second was, will anyone ever going to love me again? At the time how people viewed HIV was entirely different from today. HIV was such an unknown entity in 1986, the year I learned about my status. There was such a huge public fear which resulted in ostracizing people from their homes and sometimes communities. My fear was wondering if my HIV status was making me next on the list of a witch-hunt. I decided I didn't want to be emotionally hurt and the best way to avoid such pain was to not let anyone in. My only option it seemed was to build a wall around my heart. A wall so strong it prevented people discovering my HIV status and also had the ability to keep anyone from getting close.
As the years past I was finding out hiding behind this wall wasn't so fun after all. Yeah no one could do harm but at the same time I was lonely and miserable. Without realizing it, depression had made its way through the cracks and kept me company. Was I ever going to find love?
Luckily times have changed and many living with HIV negative now find no problem loving someone with HIV based on an increase understanding of the disease. I'm a personal witness to this as I'm now in a relationship with a person who is HIV negative and loves me unconditionally. I would never been able to meet this person if my walls had remained up. By removing myself from a place I thought would keep me safe, my reward was finding love. Placing a wall up is easy, tearing it down is hard. To receive love one must learn, brick by brick, how to step into the faith someone is out there waiting.
These are some suggestions which helped me tear down my wall
1) Do it for you. The first thing one must learn is to give permission to love self. If you're moving from a place of isolation, don't do it for anyone else but you and your happiness. You will never learn happiness if all your actions are simply meant for the benefit of someone else. Know you're worthy and embrace the feeling. Like the commercial states, 'Love the skin you're in.' It's so hard for someone to love you when you don't give yourself the same love-so start with you first.
2) Stop seeing yourself as a negative. When we look in the mirror we're always looking for what's mistaken. It may be a hair in the wrong place or a glance to see if our waistline has expanded. No matter the reason, we're looking for the bad. And sometimes we look in the mirror an seeing only HIV looking back. As a task start to look in the mirror and find all the great things about you. It doesn't have to be physical attributes but also features of your personality people can't see. Discover affirming words about yourself and redefine who you are. Embrace those words and the image looking back. So no matter what happens to you during you know how wonderful you are. What are your words of affirmation?
3) Accept you have HIV. I know this may not make sense but sometimes we're in so much denial and won't accept our HIV status. I used to stick my head in the sand and act like it didn't exist. It was my own showing of shame. By coming to terms with your HIV you can start to move forward and make the positive changes which remove you from the darkness of denial and place you into the light of truth. It's hard to start any relationship when you can't be honest with yourself. Shame is such a strong destructive device which can hold the strongest person back. For whatever reason you are HIV positive but you're still a good person. Don't carry shame based on your situation; you're stronger now and can live the best healthy and happy life possible. This is not minimizing the impact of having HIV but to create a greater awareness your identity is not a three letter acronym.
4) Don't let past rejections make you one who rejects- When we have someone walk away from us for whatever reason our natural response is to close ourselves off. We develop a mantra which states, "Never again". When you do this the other person win as they go off and find happiness and you're left alone with resentment. I personally have experienced so much rejection around my HIV status, it took me a long time to realize it was never about me but spoke more to the other person. Flip the script and realize if someone doesn't want you for you, they are intimidated by your strength. If anyone rejects you, they've just made room for someone who loves you to fill. This isn't a mind game but something you have to believe. Everyone we meet is not necessarily meant to be in our life no matter how compatible. Don't morph into the one who now rejects. Always strive to be the one who loves.
5) There's no King Arthur. Sometimes we wait for the person who has the strength to pull the sword from the stone and tear down our walls. You will be sadly disappointed and remain in a place of loneliness if it's your litmus test. While waiting for the shining knight you're probably missing out on the many suitors who have sincere attraction to you but because you made loving you so challenging you're missing out. You've created a long laundry list of qualities you don't possess yourself but expect others to have. Be realistic and accept sometimes your Prince Charming is right in front of you.
6) And last-There's not an app for everything. I don't care what anyone says but apps like Grndr and Adam4Adam are strictly for sex. Period. If anyone says they have found true love they are not the norm. Solely depending on these apps will set you down the long road of bitterness as you'll become convinced all men have the same characteristics on the mobile app. Too many of these encounters; good or bad, you'll develop the mindset that everyone simply want sex or start believing any form of a relationship is superficial. What happens next? Yep, up goes the wall.
Declare you're ready. You're ready to tear down your wall and find the relationship you're meant to have. Finding love won't happen overnight, or the process of tearing down your defenses. But the reward is so great when you finally say to yourself, I'm ready.
As I enter my 15th year with my current soul mate I'm so glad I didn't deny myself the ability to love. It took a deep understanding of my life with HIV but in general it took me not hiding behind a wall. Experiencing self-love stopped blocking the full life I desired and helped me to find love.
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Family Secret
By Aundaray Guess on February 4, 2014 5:31 PM | No Comments
One of my sad truths that I don't really share is my relationship or perhaps my non-relationship with my family. Before I begin, I have always had a certain feeling about people who in the public drag others on social media, so I state that is not my reason. Instead I use it as a frame to share how by not being close to family, matters such as my HIV status comes into play.
With the recent passing of the holiday's it has now become a norm for me not to receive a call or any type of acknowledgement. This past holiday wasn't different and instead of being sad I reasoned that at least they were being consistent. The one thing that did briefly come was the sadness that despite thinking I was close with everyone, the feeling wasn't mutual. I know I could have simply picked up the phone and reached out but frankly my whole life that's what I've been doing. I'm the one who has made the call or showed up unexpectedly at the front door to say help. I'm the one who has come running when there was a need and being across country I continued to be there physically. So although I could have called you finally reached that point of not wanting to be the giver. Even recently I received an email from a family member and thought maybe they were catching up. Instead it was the usual reason for reaching out, for financial assistance. It has worked in the past as I reasoned by helping they can see I want to be part of the family. It took a while for me to realize money doesn't buy love
In the early years of having HIV I was still alone in the battle despite them knowing my status. I remember doing a test where I stopped reaching out to them and wanted to see who would reach out knowing I was struggling with this new virus. I was the one who was surprised as there was no communication from any. It was that 'Wow" moment as I thought, "I could be here on the floor unable to get up for any reason and no one cared, at least my family". It's hard to wrap my head around it as when we do see each other in person we're having the greatest time, with good conversation and filling the room with laughter, but once we part the silence fills the space and goes back to being strangers.
I once asked my sister why she didn't reach out and she let me know that they expect me to since I was so good at it. It was then I realized it was my job and I shouldn't expect the feeling to be reciprocal. For that reason I now keep my life with HIV quiet as I feel they won't be the support I need although knowing with their support it'd be a great addition. And not that I want them to simply see me as the big/little brother with HIV, but knowing it's part of me I want them to be there when I want to share.
Without sounding like I'm telling anyone what to do, if I could give advice I would say don't try to use your HIV status as leverage for someone to love you. I say that as knowing we weren't close I thought by letting them know my big secret that it would draw them in. I built myself up to say this will be the impetus for change. Scary as it was to share it was for nothing as I didn't get the results I was looking for. My lesson was using my status as a tool.
Living with HIV a person sometimes wants to use it to create that closeness. In my case it was with family. For others it may be a partner who shows little interest in you or it could be your way of trying to save a relationship that was never there or because of your denial, was over a long time ago. It also has created in me a song that says, 'I don't need anyone'. Even though I am now partnered I still find myself in moments where I feel like an orphan and don't want to depend on anyone. Having HIV this is a bad idea as we all need support but you can't help going to that feeling of being a loner after all it is safe and you won't get hurt...again.
I don't want to say that my relationship with my family is over but the truth is the truth. If they didn't talk to each other maybe it wouldn't hurt as much but knowing among each other they are a family and it's just me who's not in the loop is discouraging. In sharing this I'm not hoping to create something that is not there. I'm also sure I will get advice saying I don't need them or family is what you make with strangers. I know that all to be the truth but there is still those small quiet moments when the hurt peeks in the back door and before the hurt makes itself comfortable, you close it tight again.
So that is my story and as I continue my life surrounded by people who love me instead of holding out for arms that are not there for me, I'll embrace the ones that are there. Even with my struggles with life, and that includes my HIV status, instead of being bitter I hope they know despite current circumstances I love them. And perhaps this is my way of reaching out as it's my job to do. And in my open honesty I can make peace with my family secret.
Aundaray on: On the web
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Life's Lesson With HIV
By Aundaray Guess on January 21, 2014 5:02 PM | 5 Comments
As I enter my 28th year of living with HIV I have to say that I have learned some valuable lessons along the way, some good and some bad but all my experiences have happened for a reason. The thing is that while you're in it you don't know that. It's not until you get from out the storm not only do you discover why you went through it but you recognize your strength for all you endured. I'm thankful I didn't come away bitter and accept all the new traits now part of my building blocks. So as the New Year's arrives and we start a new chapter I reflect on my experiences and share the 20 lessons I've learned about living with HIV.
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1) I've learned that you're either living or you're dying and despite what you heard about HIV it's not a death sentence. Yet there was a time when I simply stopped living and settled on existing. I had to recognize we all are going to die, that's a fact but until that day how will I live with the life given to me. You're either like the zombies in the TV show, The Walking Dead, walking in an aimless direction or you're taking each day as a gift and cherishing it
2) I've learned the people who have rejected me because of this disease have missed out on having the privilege of knowing such a strong individual. They must be scared of that strength and their decision is something they have to own as I embrace everything about me. And in those lessons I've learned that anyone who has rejected me has simply left room open to be filled by someone who will accept me for me
3) I am beautiful. As simple as that.
4) I've stopped asking 'Why me" and started to understand "Why me' as I have helped others to live with this disease by breaking the silence and talking about HIV. I didn't know at the time I was someone else's gift as through the years people have been made to feel less alone as they listened to shared experiences.
5) My doctor is my friend and if he's not then he has to go. Just because he/she wears the white coat and has the degree we're in this together. At one point I thought I had to submit to everything he prescribed or said but learned that my voice is just as strong as his. So if it's working, then keep it strong but if it's a one sided relationship then he/she has to go.
6) When I used to complain about taking medications a nurse gave me great sound advice. I was hoping for sympathy but she served me a spoonful of hard love as without blinking she told me, "If you have something that's saving your life and its working stop complaining and take the damn pills." Lesson still appreciated today.
7) Start dreaming again.
8) If you're worried about anything killing you just try being best friends with your anger. Having this disease I have had many opportunities to be angry but after walking that walk I learned quickly it wasn't getting me nowhere. Anger strips you down from the inside and clouds your dreams. I accepted that upon hearing my status I had the right to be anger but for me to be well I had to not let my anger guide me.
9) I've learned its okay to cry but to not let those tears create an ocean that I can drown me. Along with anger, tears will come but at a point I had to wipe them away and start heading back to shore.
10) Give myself a hug everyday
11) Sex is still good
12) Stigma is a two way street and don't assume everyone will reject you because of your status. Yes stigma is real and people do inflict it on those who are positive but sometimes I have to recognize when I'm handing out my own dose of stigma. In this lesson I had to learn that not everyone who is negative is ignorant about this disease. This was a good lesson for me to learn as it helped with disclosing and most importantly it helped me in relationships whether friendly or intimate.
13) I'm more than HIV. It seemed that with the doctors, the pills and condoms shoved in my face HIV was all I would ever be. But in thinking that I wasn't allowing myself to see the fullness of who I am. I may write and speak about HIV but the one thing I tell myself is not to limit life to a three letter word.
14) I've accepted where people are in their HIV treatment and what works for me won't necessarily work for someone else. When handing out advice I have to check myself and accept that my treatment was designed for me and people react to things in a different way. So whether it's advice, the way I keep track of taking my medication or anything related to my HIV, it's mine and may not work for others. So I keep my judgments to myself.
15) I've learned as I approach my 28th year of living with HIV that it's not a competition when others share their length of time. The one secret of those living with HIV is sometimes we play a one-man-up game where we trump others with how long we've been positive. We show our battles scars as if having HIV is a competition. It's done in a non-malicious way but if anyone wins we all do for being able to proudly state how long we've been living with this disease is the true prize.
16) I learned that whether it's my cd4 count, my weight or viral load- to heed the numbers but not let the numbers dictate my state of mind. Not saying the numbers are not important but developing anxiety around your numbers is not good. I learned to celebrate the good numbers and don't stress if they will fall. Just keep doing what I'm doing. And if they're dropping then I have to look at stopping what I'm doing that's probably causing the numbers to drop
17) I'm not being punished by God or enduring any other revenge.
18) I can still cross oceans
19) Drinking chocolate milk helps the pills go down easy
20) I've learned to be open and accept anything good or bad that comes my way. And as I step forward even if there is no cure I know that my life will be the best one I can make. So I welcome my next milestone and embrace this journey we call life!