A Bitter Pill
By Philip D.
September 7, 2010
I'm not going to pretend my inbox is flooded with readers' responses, but the best part of doing this blog are the connections I've made with people that take time out to read what I've written, and share something about themselves with me. Surprising as it is to those who truly know me, I'm asked how I stay so "upbeat" (the word most often used) with such a nasty little viral addition to my life. To that my man, John, might just laugh until he cried. I wish I found it quite as funny but to be truthful, depression and I go way back and HIV and the meds haven't helped matters. Or so I thought.
I've lost count just how many times I deleted this entry and then started again, each with the common goal of sharing what I've learned about fighting depression with those who visit this site and find themselves in the same boat. Disappointingly, the early versions just ended up sounding like bad magazine articles. Finally, I figured any readers I might have deserved something a bit more personal than Fish Oil, Light Therapy and aromatherapy (although I strongly believe in all three -- email directly if you'd like to know more). So I decided to put it away for a few weeks and then, out of nowhere, fate intervened
Long story short, a longtime friend that works for Neuro Science, a company that tests brain chemistry and makes supplements available to correct imbalances, made it possible for me to send my saliva/urine via UPS to a testing center in Wisconsin to measure my levels of cortisol and ten various neurotransmitters (seratonin, dopamine, etc).
After holding on to the test kit for six months I realized I needed to know if my levels were normal, or whether my suspicions would be confirmed: that the meds that were keeping me alive were also making me feel depressed and anxious sometimes.
As I waited for the results I wasn't sure if I would be happier to find that I was alarmingly low in everything possible or that I was perfectly fine in the chemistry department. The first option could be fixed with more pharmaceuticals; but the second would require looking further, and quite possibly a bit of inward work. Uh-oh; I hate that.
I was about to be given a bitter pill to swallow. The results were in; my chemistry wasn't perfect but I'm guessing that several of the lifestyle changes I've made and the pharmaceuticals/supplements that I take have done a good job at keeping me reasonably balanced. However, I was so sure that the emotional roller coaster I've been riding the past two years was being driven by the HIV meds and what they were doing to my brain, I never really gave this possible outcome much thought.
Since then, I think about it ... a lot. It has been so convenient for me to blame my status and medications for the sadness, frustration and hopelessness I sometimes feel, and the limitations I have erroneously placed on my future since testing positive. If the chemicals I put inside me every evening and the virus that requires them weren't the culprit, I knew it had to be some other "unfinished business."
After several sessions with a therapist who asked me some pretty tough questions that I didn't have the answers to, I then looked myself in the mirror and asked: What else have you been using HIV as an excuse for? Damn it. Several things instantly came to mind.
Now I suppose I could share my findings with each of you but after serious consideration, I've purposely chosen not to. Partially because I'm still drawing my own conclusions but mostly because I don't want to put any ideas into your heads.
But still, if I could be so bold: the next time you find yourself in front of something reflective, you might ask yourself the same thing. Is there something in your own life that you have wrongly accused that annoying little virus for?
I would love to hear about what you uncover.
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Comment by: Karen
Tue., Oct. 5, 2010 at 4:44 am EDT
I've had an AIDS diagnosis since 1993 after getting stuck by a needle while drawing blood at a hospital where I was working as an RN. It's been both the worst and the best experience of my life. I'm very grateful that I'm still alive and HIV/AIDS is now considered a chronic condition with medication that does help. At the time of the needlestick I wasn't taking good care of myself, either emotionally or physically . I was in a DV relationship with my childrens father and was clinically depressed. I had lost my way... I was forced to make a decision to give up trying and die or to reassess my life and make positive changes. Thank God I decided to turn my life around and become empowered by taking better care of myself, getting divorced and going back to college. It has definately been a journey with many ups and downs. The first 3 years I barely got by on a daily basis with lots of negative thinking and depression. During that time I was lucky to have people around me that "cared about me until I could care about myself". That was the only way I lived through that dark period. I barely survived on a daily basis by just doing what I was told and "putting one foot in front of the other". After that period, I slowly started adjusting to the fact that having AIDS was now a part of my life and gradually over time it stopped being the first thing I thought about when I woke up, all throughout the day and fell asleep thinking about. I think that was my "acceptance" period. I learned that I couldn't doing anything to change my status,so I had to go on with my life the best I could. Now, at the age of 51, I am learning how to deal with aging and AIDS, which isn't a lot of fun. I have more symptoms now and dont' know if I can keep working a 40 hr. work week. At this time, I have had to keep practicing being "mindful" and living each moment instead of "being afraid about what's going to happen." I have no control over that. Good luck with your journey.
Comment by: dave
Thu., Sep. 30, 2010 at 8:15 pm EDT
Phillip, undeniably you confront the use of HIV as the blame for all that goes wrong in one's life. I, however, believe that you can't separate HIV from who one happens to be, both before HIV and after HIV diagnosis. Further, these HAART drugs are in fact a wonderful gift to surpress this virus. But these drugs wreak havoc on your body and by extension on your mind as well. Healthcare professionals need to acknowledge the toxicities of these drugs ( even promoting depression) and validate what their patients are reporting to them.
Comment by: Philip D.
Sun., Sep. 26, 2010 at 2:34 pm EDT
Thanks for leaving your comments here for other readers to view. Sharing your opinions and experiences with others does make this forum infinitely more interesting and gives a greater chance for building community. I apologize for not responding individually, but if you watched me type for a few minutes, you'd understand why.
This time, my inbox was supplied with particularly varied viewpoints. It seems that while some use HIV as an excuse not to do something like having sex or moving forward with future plans, others found HIV propelled them to start doing something like working out, cultivating relationships or eating better.
One other interesting thing I noticed from the advice offered by long term survivors was to give myself time. Even though it seems like forever, it's important for me to remember it's only been three years since my diagnosis. Those who have had decades (or even longer) to assimilate the changes required after HIV moves in, have done so little by little.
I started out blogging here to inform others but it turns out I'm learning considerably more from you all. I am grateful for that. Thank you for reading.
Comment by: Neal R.
Sat., Sep. 18, 2010 at 10:12 am EDT
I've been "safe" since 1983 and tested + in 1985 when the test was first publicly available. After "sequential monotherapy" in the 1990's (who knew then?) I was "on hold" as my HIV smoldered with various resistance mutations (thank God for M184V which slowed the virus enough to give me time for a new combo that would work!). After hitting the official "AIDS defining CD4 criteria" and getting Norwegian scabies in Nov 2005, I found a triple regimen that worked and still does. I lost me ER job in 1991 because of AIDS stigma, and income went from what would have been the first time in my life as a doctor to make $100K down to $17K. Although depression runs in my family and myself from time to time (especially winter) I occupied myself with other things then and still find joy and fulfillment in life. My CD4 is back up and viral load undetectable since 2006! I still work part time with AIDS patients and addicts. Looking back, with all its twists and turns, I see that Life has taken me on a journey of spiritual unfoldment and growth. I would have it no other way. I'm soon to be 59 and plan to die at age 87 of other causes. I honor each of your individual HIV journeys. One thing that helped me through the rough spots was reading a book written over 100 years ago by Ralph Waldo Trine called "In Tune With The Infinite". The first words in his preface are: "The optimist is right. The pessimist is right." The Power we have in our lives are the choices we make in how to see or "frame" that which happens around us. We have a small part in creating our reality. I've chosen to make the best of things as far as I am able and encourage you to explore that possibility too. Of course the choice is yours. You can chose to look at reasons why you couldn't try it (you are of course right!)n or why you might try it (of course you are right again!) Namaste'
Comment by: David
(palm springs ca)
Thu., Sep. 16, 2010 at 3:59 pm EDT
Ive been around as an HIV + person since 1981....so to all those who say My futures shot.....WRONG!!!!
Comment by: John
Thu., Sep. 16, 2010 at 3:28 pm EDT
That "annoying little virus" is still killing 2 million human beings a year. I'm startled when I read or hear someone in the U.S.--usually a white gay man with private health insurance--proclaim "the AIDS crisis is over" simply because he happens to be doing well on the expensive, toxic chemotherapies we have to take to manage HIV. The insularity and arrogance are astonishing, though, when one person's or a thousand people's experience is projected to the entire human race.
Frankly, I still wish I didn't have HIV. I already appreciated life more deeply than most because I watched my friends die from AIDS in my 20s and 30s. I didn't need HIV myself to be reminded. And I didn't need a deadly virus to remind me--yes, folks, it is STILL a deadly virus no matter how many cute little names someone chooses to give it.
Comment by: Peter
(Manchester, United Kingdom.)
Wed., Sep. 15, 2010 at 5:57 am EDT
Thanks for a very worthwhile short article, Philip. You raise a very very important point. It most certainly IS possible for all of us HIV+ people to blame the virus for things for which the virus is not culpable.
The challenge to every one of us HIV+ people is always having to work out what the virus is responsible for and what not. This is a challenge that is unending for us because until such time as a cure is found this devastating virus is not going to go away.
One of the people who has replied to you already says that the situation is different for all of us. How true that is. We have HIV+ people who faithfully take their meds but have humps on their backs, or fat bellies, or shrunken faces, or matchstick limbs, or possibly all of these at once. And at the other extreme there ARE HIV+ people who have been positive for 25 years, if not longer, who frequently miss taking their daily drugs, but who are fantastically fit and optimistic. I know one of these people. He's 50 years old and with extraordinary discipline he visits the gym several times a week and he looks like a muscular and stunning 35 year old. He speaks at the rate of a hurricane and has little trouble recalling historical dates, names, and so forth.
So, physically, the virus affects us all differently. It would be wrong to claim that some people have no valid physical reason for depression.
But for all of us who are still alive, each day the questions remain: how much of what I am experiencing is due to that virus and how much is due to my physical behaviour and the way that I am thinking.
These are questions we all have to ask and attend to.
Thanks for raising the matter.
(And I'm glad to perceive that you appear to be one of the very lucky people who at the moment is not badly physically afflicted by the virus.)
Comment by: Jeff046
Sat., Sep. 11, 2010 at 1:49 pm EDT
My soul hurts very much. I often find myself crying, regretting, feeling sad and shameful. Even, when I feel lucky that I contracted the disease now, when some science has come to the rescue, this disease is still very tough to deal with. In my case, HIV has driven me to a dark and nasty closet from which I observe Life. My sadness and depression is fully linked to the stigma that I perceive around me. The stigma is huge, is real and will not go away.
Comment by: Afterdream
Sat., Sep. 11, 2010 at 12:05 pm EDT
Each person is a different person and each mind is indeed unique. If it wasn't like that, life would be very boring :)
I knew that I was poz a few months ago...now i'm learning and "studying" to live my life under this new condition together with my wife and child.
When i read the testimonials of people with + 10 and + 20 of poz life it just gives me more strengh to fight over this.
I'm doing everything possible to not get depressed trying to be "poz over the poz" because there's a beautiful life out there for us all.
We just need to take care of ourselves and strictly follow the rules under our condition.
Be POZ over the POZ! :)
PS: Sorry for my poor english :)
Comment by: Ted
Sat., Sep. 11, 2010 at 1:31 am EDT
I think so many feel depression is due to things happening in your life that you can just talk out. I would say most have a chemical imbalance and talking about problems may help, but it won't completely solve the problem. I had depression before HIV and I know it is a chemical problem for me. I can't just go talk it out. Having said that, I do believe therapy can help to lessen depression. About the test you did, I didn't know we could test for serotonin and other brain chemicals linked to depression. How do we do this and is it expensive? I think many will experience depression after some bad event but are able to bounce back fairly well and move on with life. For those with chemical imbalances, it isn't that easy.
Comment by: Zeke
Thu., Sep. 9, 2010 at 6:59 pm EDT
Hey Deke, I hear you. The worst is children who stare and know. But then a waitress will look at you, smile and say, "Hi, Sugar."
Comment by: JZ
Thu., Sep. 9, 2010 at 5:09 pm EDT
I appreciate what you wrote. I am currently going through a severe depression. I am about to turn 50 and have been positive for 22+years. I blame the virus for alomost everything wrong in my life. I gave up a lucrative career in 1995 after being very sick for over 3 years. HIV caused CMV Retinitis which ultimately lead to renal failure which lead to dialysis for almost a decade. I received a transplant in late 2008 and am completely impotent(nothing helps) which kills me.
I am currently in therapy and shelling out $100/session and afer 2 sessions I feel it is doing me no good. The situation cannot be fixed and I am tired of making the best of it. I ecercise, eat right, am quite fit for my age, but also extremely unhappy a good chunk of the time.
Comment by: Dave P.
(Auburn, New York)
Thu., Sep. 9, 2010 at 4:27 pm EDT
I have tried not to use my diagnosis of AIDS 10 years ago as an excuse for anything, and for the most part have succeeded. I do have to say that once in a while it would be nice to have a physician or PA acknowledge that this virus does in fact add to some issues, from depression to body ache and fatigue, and even allergies. Living in Upstate New York, I also believe that weather can effect us. I have had an incredibly trying Summer, how much of this is from my own doing?? Who knows. My numbers continue to be excellent, and I continue to try and better myself by finishing my bachelors as well as creating, and taking time to enjoy the company of my girlfriend.. but this virus does indeed wear on me! I sympathize and understand your sentiment, and I am not one to rely on a pill to alleviate a problem, but, I would be remiss in not acknowledging that this virus can and does take a toll.
If you care to correspond further, feel free! I look forward to interesting discussion.
Comment by: Fitzie
(West Hollywood, CA)
Thu., Sep. 9, 2010 at 3:50 pm EDT
Your short piece raised some questions that bear looking at. However, you failed to discuss what's actually happening with you and passed it off with the limp excuse of not wanting to "put ideas into" your readers heads. What condescending crap. We get through these things by sharing our experience, and you copped out as a writer, and as a person in a position to do something about what's going on re: depression. You should know better.
Comment by: Deke
Thu., Sep. 9, 2010 at 1:50 pm EDT
Age (61), rural setting with little support, pipe-cleaner arms and legs, huge belly, and aids-face. Depression has moved in and made itself at home. I dont even clean house3 anymore...why bother?
Comment by: Kirk
Wed., Sep. 8, 2010 at 10:29 pm EDT
Hi Phillip. I don't mean to gloat or belittle your own travails with being HIV+. I just want to say that I tested positive in 1985, and while I certainly had a lot of anguish about it, I didn't gave up on the future, didn't to quit college (I was in my early 20s at the time), didn't run up the balance on my credit cards, in short, didn't live my life as if I had one foot in the grave. Yes, I admit I'm lucky that I managed to survive and stay healthy until the breakthrough year of 1996. Still, I refused to think of myself as having one foot in the grave, and I think that allowed me to stay focused on staying healthy and optimistic.
I have to admit, I am baffled at how so many people who test positive today (read: after 1996) react as if their lives-in-earnest are over. Sure, finding out that you have HIV is life-changing. It's understood that no one really *wants* to have a chronic health problem. But the current therapy is keeping most HIV+ people alive and healthy, and giving them strong reason to be optimistic that they will live to see the day when HIV is rendered harmless.
There is still a lot of stigma associated with becoming and being HIV+. So yes, it is understandable that one would feel the anger and guilt that unfortunately tends to come with the diagnosis. But it's important not to let those emotions cloud your perception of what is now possible and what is well within the realm of possibility.
Wishing you all the best for many, many, many, many, many...years to come!
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A Positive Spin
After testing HIV positive in 2007, I promised myself that I would make something "good" from all that I was handed. From the very beginning, each time I was presented with an obstacle or challenge, I also received some help. Usually in the form of a person, sometimes an opportunity; but I have grown so much, it has made it impossible for me to call the past few years "bad." Although I've never written much of anything before, I have been so incredibly fortunate, I feel like I must pay it forward somehow. Maybe by sharing my experience, it will help those starting later in the game, on the fast track to HAART, or anyone that's feeling a bit isolated or "stuck" with their diagnosis.
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