Breaking the Silence on My Struggle With HIV Meds
March 5, 2013
It has been over a year since I have written a blog. Why should I? What allows me to sit here and continue writing about life with HIV when I face so many struggles every day? No one wants to hear about my crap, right? Everyone wants to hear me tell my peers to take their meds and be safe right? How can I tell anyone to take meds and to take care of themselves when I have been struggling with it myself? Who am I to tell someone to be med compliant when I have built a resistance against Atripla because of my own foolishness?
As I sit here in my living room staring at these bottles of pills on the table It hit me. This is exactly what my peers need to hear. THE TRUTH. How can I blog about RAW TALK when I am too worried about "what I should be saying", instead of just saying exactly what should be said, THE TRUTH!
I am all for the "This is no longer a death sentence" campaign, but I think some of my peers need to hear the other side of this as well. HIV is not a death sentence, but that applies to those who take care of their bodies and take their medicine as prescribed. At 21 years old I didn't have to care about my health. I could eat what I wanted, go without sleep for as long as I could handle, not exercise, no prostate exams or checks for anal cancers, and I could continue this lifestyle for years. My health wasn't important until I got old, right? So at 21 years old how am I supposed to go from such carefree behavior to being told that I'm to take these pills EVERY DAY FOR THE REST OF MY LIFE!
But I was ready. I have people to please, people that follow what I am saying so I have to be ready to set the example. So I started the medicine. At first it was OK. I was able to take them every day without thinking about it. Most days I forgot I even had HIV until it was time for me to take those pills. Then those days started to become more frequent. Then I started to resent those pills. For me those pills were a constant reminder that I AM LIVING WITH HIV.
Every night I began to replay the day I slept with my ex, him lying to me about being positive, the fact that I infected someone else, the thoughts that I may one day die from whatever opportunistic infection takes over my body. FUCK THESE PILLS! I would rather not take them and forget that I even had this than to go every night facing my mistake.
This was my way of thinking for a while. I was asked to speak in Chicago on life with HIV and when I was done I sat down with a few counselors and began to confide in them. I told them my struggle with taking my medication. The reaction was unexpected. I was talked down to like a huge hypocrite, and given the "You know better" speech. But one counselor in the group didn't do that. She actually broke it down for me in a way that made me feel like she understood. She told me that HIV is invisible to my eyes, but the pills are something I can see. Even though the pills are here to help me I still resent them. This is because instead of looking at the pills as a means of help I have turned the pills into HIV and that's why I won't take them. This made so much sense to me, but it only helped temporarily.
I went off the meds again. Constantly moving, chasing money to care for my children, picking up jobs where I could provide HIV education. Each time I would move I would leave my kids with my mother who lived right across the street from the school. I didn't want to bring so much instability into their lives.
While doing an assignment in Baltimore, Md., I stayed with a friend who was also HIV positive. We would remind each other to take our medicine so this helped me stay on track. My friend was evicted from his home and that left me sleeping in my car. I moved in with an associate who had no idea I was HIV positive. This was an awkward situation for me. I am very open with my HIV status but now I was living with this man who I had heard on many occasion express his fear of HIV positive people. I did not feel like this was a moment for me provide the education needed either. I wanted a place to live and that's what was at the front of my mind! So where would I hide my pills. My mother was mailing me prescriptions from Michigan at my previous address. For fear of them finding out I chose to come off my meds again.
In 2012 a friend of mine passed away from complications of AIDS. He was around my age. This struck enough fear in me to get back into care. This won't be easy but I am going to try this again. I truly understand why it is so hard for people my age to be med compliant. Unstable living conditions, fear of unwanted disclosure, just not being ready yet, the constant reminder of the virus. It is very hard! This is something I would want all HIV counselors to understand. Client-centered counseling doesn't mean that we force our ideas about the meds on people or when we think they should start. We should really try to understand the complications the person may face and then work with that client to get them to the right mental place.
Send Jermaine an e-mail.
Read Jermaine's blog, PozLyfe09: Raw Talk on Life With HIV.
This article was provided by TheBody.com.
Comment by: Mark Vinette
(Saint Petersburg, FL)
Sun., Sep. 8, 2013 at 7:48 pm EDT
Jermain, I am surprised that you consider yourself old at your age. This is a downfall of gay people who are not poz. I remember when I was 19 and was going to turn 20. OH my God, I will not be a teenager anymore. How can I be so old. As time went on I learned a lot, including that worrying about age was the most ridiculous thing I had ever done. Can you tell me that you can always stay your age and never get older? Very silly. As far as "those pills" go you have to get over the stigma. Those pills are what are keeping you alive, just as someone with cancer, or any other life threatening disease. I have had HIV for 15 years now and I look forward to taking my meds as I know they are keeping me alive. If you are lucky like me and have never had a problem then why worry about it? You can't stop aging (if you find a way let me know lol) and you have a choice. Look at your meds as life saving. So if it is too much trouble stop taking them. Then you will probably die and early death. I believe science and medical treatments are all things that God has given us. I am not overly religious but I do believe that all doctors work through God's given talents. I don't know if you believe in God but I do and every time I go for my routine labs I thank God for the results. Perhaps you should start thinking in that way too. The meds are not your enemies and there are millions of people with other diseases who have to take daily medications. You can continue to feel sorry for yourself or decide to go on with your life and look at those pills as a gift from God. IT is your choice and no one but you can make it. Good luck, I hope this helped.
Comment by: paul
Wed., Aug. 28, 2013 at 1:33 pm EDT
I started meds 2 years ago and never missed a day and never will, I also have not been sick in 5 years and I would like to keep it that way, I don't see what is so difficult about taking 1 pill daily
Comment by: j
Thu., Jun. 13, 2013 at 6:12 pm EDT
I also finally realized I was thinking of the pills as a negative reminder instead of as help to stay alive. Thanks for your story and best of luck to you, Jermaine!!
Comment by: Tez
Wed., Apr. 3, 2013 at 3:12 pm EDT
Jermaine is you want to remember to take your meds. Set a reminder on your cell phone. Before cell phones we had AZT beepers that went off every 8 hours. Now it is very easy to remember to take your meds. And the reality is you do have HIV. Wishing you didn't or rehashing the past won't change it. It will only cause you suffering and stress. Neither are good for your health. Be well. Take your pills and cut our that bit of stress, bud.
Comment by: Frederick Wright
Sun., Mar. 24, 2013 at 12:18 pm EDT
Wow, you blog is so sad, and I like to suggest going to a cure page called Ambush, for I BELIEVE the Cure is HeRE, if one can believe, yes the wholeness is here, complete health is heRE for many to take as one turns from the THEORIES of the old leaders and become themselves in control of their critical thinking and journey for wholeness, yes, forgive yourself and others my friend and get your cure. Be Well and Free, no need to be chained to the body of PHARMA anymore, be free I pray for you and yours.
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Comment by: Tez
Wed., Apr. 3, 2013 at 3:15 pm EDT
And by all means ignore these snake oil salesmen. I need more than his "belief". I need science. That is what meds are. If I had a dime for every person with a cure I'd be rich. Total BS.
Comment by: sasha
Thu., Mar. 21, 2013 at 4:42 pm EDT
I was so delighted to read this article. I have been back on meds for the last 3 months, as after I had my son nearly 7yrs ago I didn't want reminding of what I had I wanted to be normal like my friends. I struggled over the years to take my meds but it came to me recently why I kept messing them up... Because I wasn't happy my mental health was bad and the father of my son was horrible at times this mad me reject my meds. So it is TRUE all obsticles can affect your way of dealing with HIV. I hate that I was born with it and had no decision on it at all but I am 24 and am happy now and everyone where I live knows I have it because I want people to be aware that just because people have HIV that doesn't mean we are not people and have feelings I have been challenged by people nasty comments and so on ! My TRUE friends are supportive and stand up fir me when anything is said I AM HIV+ and I don't care who know anymore :) x
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Comment by: Ty
Fri., Mar. 29, 2013 at 11:05 am EDT
Thanks for your insight. Both of you so young but wiser than some of the old hands about dealing with this problem/bad habit.
At least I understand more why I do it, apart from being just fed up..
Keep your chins up - and reach to 'positive' and truly supportive friends.
Comment by: Betty
Thu., Mar. 21, 2013 at 2:28 pm EDT
Thank you for reminding everyone this disease is hard to live with!! I have so many friends who cheat on their spouse’s, unprotected, without fear because they believe this virus is just like having Diabetes. Most families of people who pass away from AIDS complications hide their cause of death with labels like “Congestive Heart Failure”, “Breast Cancer”, “Kidney Failure”, “Aneurism”, etc. so almost all of my friends believe people aren’t’ dying from AIDS in Texas anymore. I know how STUPID that sounds but believe me it’s true. For example, I asked a Friend if she knew anyone who died from AIDS and she said only one person, her Sister’s EX. When I asked the reason her Sister passed away she said, “She died from Cancer after a 16 year battle.” IKR, shaking my head. We appreciate you staying true to yourself.
Comment by: T dog
Fri., Mar. 15, 2013 at 11:17 pm EDT
Wow this was a good read, I recently started back on meds after being off for 5 years, I stated back of fear not making it another year, due to the fact I was always so tired and diff out breaks of some kind of allergic reaction about 2 yr ago. I don't have insu, so going back to state funded Ryan white was the best thing I did, I feel so much better now not that I felt that bad before but someone 32 years of age should have a whole lot of energy. I been pos for 10 yr
Comment by: Paul M.
(London United Kingdom England )
Thu., Mar. 14, 2013 at 6:10 pm EDT
I was really touched by your story and I want to say stay strong. People don't understand because they are not going through it. I will be praying for you I really care. My parents have always taught me to think about everybody and not ourselves. Keep in touch, keep me inform of everything. Most of all you have a real friend and I mean that.
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