ASUNTA’S DIARY: Lipodystrophy has disfigured me, but I still sleep soundly

Adverse possession. “The possession or occupation of land or property without the owner’s permission as a method of acquiring legal ownership.

What’s that got to do with HIV? Oodles. Trust me. Folks, lipodystrophy, an adverse side-effect of my antiretroviral therapy (ART), has occupied my body without my permission, and is out to acquire ownership of my mind, body and soul.

Lipo-what? Lipodystrophy is a disorder that causes weight loss and triggers excessively high blood fat levels, fats that can be deposited around the back, bottom and thighs.

Lipodystrophy is, I guess, the only visible side effect of my ART. There are myriad other side effects which are less visible to the human eye, but which are also depressing. Not so long ago, I shared with you how I feared I was losing my mind.

This was after Dr Kinyanjui put me on a new treatment regimen, and I was stuck with 13 legions of demons straight from pharma hell.

SELF-ESTEEM ISSUES 

Although I had the pre-ART counselling, I did not exactly know what I was getting into when I started it. What I knew I wanted to do, badly, was to live. At all costs. And then lipodystrophy happened. That was about 10 years ago.

If my memory serves me right, I have not heard from HIV-positive brothers who have this side-effects. I suppose they have them, but go about it in their typical mute mode.

Women struggle with self-esteem issues. Throw a curveball like lipodystrophy in the self-esteem game, and you have a woman who’s lost twelve-nil. 

LIPODYSTROPHY-LETTER DAY

Recently, I received an email from a reader who wanted me to advice on how to cope with lipodystrophy.

“I’m in my late twenties, and I’ve been on ARVs for eight years now,” she wrote, “On the day of my official diagnosis, the doctor told me that my CD4 count was that of a dead person, but I am still alive through the grace of God.”

“I have lipodystrophy. The fat on my hips is gone, and I have deposits on my stomach and back. I also have a buffalo hump. I often overhear unkind comments from people who do not even bother to lower their voices.

"It’s at such moments that my spirit almost dies, but then I remind myself that God has brought me from far and that I still have 50-plus years to go! How do I manage lipodystrophy?” 

MY OPINION

Doctors are capable of saying hurtful things to their patients - “Your CD4 count is that of a dead person.” That is what this young woman’s doctor told her.

This is a harrowing diagnosis from your doctor, someone you thought would give you a lifeline; but instead hands you a rope to hang yourself. This is unacceptable, and yet it happens.

I have lived long enough with HIV (and lipodystrophy) to know people will always talk. I auto-switch off negativity. If I put to heart every word that people say, I would never sleep. Even if I count all the sheep in the world.

Coping with lipodystrophy is more like coping with a mole on your nose. Moles are dark, some even have hair growing from them.

Just like with a mole, I have the choice to either let the growth be a nuisance for the rest of my life, or be a mark that reminds me I’m alive and kicking. I tell myself that this is what I’ve got, and it doesn’t have to get me. It’s a mere detail. I cannot change people’s perceptions.

What I can change is my attitude and how I respond to people’s brickbats.

I also look at the pros and cons. The benefits of my ART far outweigh the side-effects. I love myself. All of me. Humpback and rump included. Sure, I have bad mole days, when self-esteem issues get the better of me. When voices in my head concur with the hate mail, but I snap out of it after looking at the big picture: life. 

Besides, the love I get from the most important people in my life, my five kids, trumps all the hate in the world. Even better, my beautiful bunch don’t even notice this side-effect.