Cary’s classic column from Friday, Apr 25, 2003
I’ve kept my HIV-positive status to myself except for one time — and that person doesn’t communicate with me anymore.
I really like the humane advice you give and I need some myself.
I am HIV positive and have known this for 15 years now, ever since I was in my mid-20s. Since I have never had an associated illness (never even a symptom), am doing well on the available medications, and do not fit the profile that many people associate with the condition, hardly anyone knows about my status.
This is how I want it. I vowed from the beginning that I would live a “normal” life as long as possible. I am also very aware that telling people puts a great burden on them because they have to live with upsetting knowledge, and I also fear distorting friendships by having people feel sorry for me (which I dread), or people sticking around when they really don’t like me just because they feel somehow obliged to.
At the same time, as I’m sure you can imagine, it gets very lonely, and this includes time spent with support groups (which I have not found very useful in my case). Apart from the existential issues, there are the very visible and practical ones: You have to hide to pop all your pills, you have to take them with or without food, you get tired, your body changes in bizarre ways, you have to make up excuses at work for why you have so many doctor’s appointments. Just covering, lying and planning all this is exhausting.
It is also true that I do get very depressed, in a way that I don’t think I would if I was negative. Inevitably, friends notice this and it seems downright inexplicable to them, since on the outside I seem to have a lot going for me.
That’s my prelude. A couple of weeks ago, fed up with the constant dissembling and lying, I “outed” myself to a friend in an e-mail (we live some distance apart and all our communications are by e-mail.) This was an unusual thing for me to do, but I just wanted this person to understand me a bit better, in particular, understand why I get anxious and down when no obvious explanation exists. There is no question of any (sexually) intimate relationship between us — we have talked about some very personal topics in the past, and I decided to step out of my comfort zone and include this one.
Well, two weeks later, no response, whereas normally we communicate several times per week.
I feel awful. You feel so vulnerable when you disclose information like this — you only do so if you feel you can totally trust the person. I mean, trust the person to behave with compassion, solidarity and maturity. I guess the silence means I misplaced my trust. I am also angry with myself for my poor judgment, for making myself vulnerable to someone who obviously doesn’t share my own values about being there for friends in need.
Cary, are my reactions appropriate, in your opinion? Should I take this as a lesson to shut up in the future — once bitten, twice shy? I would also like to take this opportunity of conveying to your readers that should they ever find themselves on the receiving end of information like this, the worst thing they can do is withdraw in silence. If you can’t think of what to say, at least say that you can’t think of what to say.
Also, if ever this person does make contact with me again, what would be the best way for me to handle it? It is hard for me to judge, since I am so used to being the bearer of bad tidings and not the recipient (except from my doctor).
I applaud you for having the courage to out yourself this one time, and I’m sorry it did not turn out better. I think you have taken on far too heavy a burden of secrecy, and this painful first step should be followed by a second and a third, which should be progressively less painful, so that eventually you can come out of this mode of secrecy altogether. It is far too much work to hide such a thing; should the disease eventually weaken you, it will be an unsupportable burden. You deserve to live in a community of compassionate people who do not need to be deceived. The only way you can find such people is to trust them with your truth. Some may react badly. Most, I think you will find, will respond like human beings.
Not only do you deserve to be able to live honestly and openly with your disease, but those who truly care about you also deserve to know the truth. You can’t control what their reactions will be; that is the risk you must take to live in community with others.
I think your advice about how to accept such information is splendid. People often do the wrong thing when they hear such news. I think part of the reason is that we overestimate the amount of influence our behavior has on others. We think that if we say the wrong thing we will devastate someone else. We think if we reveal our disease that others will be incapacitated, unable to respond. And if we find a case in which that is so, we tend to see it as proof. But I do believe at the heart of this over-regard for others is a kind of over-regard for our own importance. The truth, I believe, is that while others are more capable of compassion than we might surmise, they are also not quite as concerned with us as we would like to believe. That is, we are not the center of their lives. So when we deliver such news it is often neither as devastating as we fear nor as earthshakingly important as we would wish.
Further, when, believing that we must control what is known about us, we habitually act with deception, we may hide the particulars but what we reveal is the pattern of deception itself; people may not perceive that we are HIV positive; they just perceive that we are deceptive.
I understand your desire not to become an emotional burden, but I think you have taken it too far, and everyone will benefit if you began confiding in others about your status.
And if that person you first confided in should finally get back to you, try to stick to the facts. Just say you noticed that after you said you were HIV positive, you didn’t hear anything for quite a while, and that it was hurtful, and see if you can have a frank and open discussion about it.