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I’m lonely

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Cary’s classic column from

I’ve kept my HIV-positive status to myself except for one time — and that person doesn’t communicate with me anymore.


Dear Cary,

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).

Wondering Alone

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Dear Wondering,

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.

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4 thoughts on “I’m lonely”

  1. What a great response to a very sad situation. It was somewhat of a revelation to me that, by keeping this thing secret, the LW was eliminating the possibility of building a supportive community. I truly hope s/he decided to change her/his approach and eventually got the desired caring support. My heart goes out to anyone who has to go it alone. That’s so hard.

    Carey raised another brilliant point when he wrote that deception is palpable and that, unfortunately, others won’t know there is a good reason, only that deception is taking place. We think we hide our stuff and we do, but we can’t hide that we’re hiding something. Such a good point!

    I hope things turned around for the LW and he found blessings.

  2. I don’t think LW made a mistake in using the anonymity of the internet. Sometimes email allows us to open up in ways that feel too hard with a live person in front of us. The best choice for who to share your information with is who you feel you *can* share your information with.

    I keep thinking of the line “I guess the silence means I misplaced my trust.” I’m not sure it does. It depends on what LW was trusting in. Secrecy? A chance to speak without having someone freak out and run from the restaurant? Even silence doesn’t mean there isn’t sympathy, all you can count on is that the other person doesn’t know how to reply yet. (Except I disappeared from email for 3 weeks recently because I wasn’t home. That would look the same.)

    But Cary has the ticket here – once is good, more is better.

    1. There was nothing anonymous about this communication between two people who have chosen to communicate with each other using only email communication, for some time…prior to the revelation from the LW to this person.
      What LW was left with, at the time the letter was sent to Cary was doubt, concerning an unusual break in a communication pattern that had all ready been established before LW revealed this obviously painful secret.
      The advantage of in person or telephone communication, is you get immediate reaction in the NOW.
      Even silence can be addressed. An interpretation of someone running from a restaurant sounds like an unneeded and strange dramatics reaction…especially in the 21rst century. Plus, LW does not need a fantasy scenario, filled with an overkill reaction that could be shaming. It can put horrible undue stress on the LW.

      Indifference and no communication can let someone imagine the worst, when the person is in a vulnerable state of mind, as this LW demonstrated within the context of what was communicated to Cary, and us, the readers.
      The unknown is the last thing LW needed from this established email relationship, when revealing a secret that caused LW so much suffering.

      Again, I hope this other person eventually picked up the telephone and communicated something like Cary gave as an example. NOT knowing, can be a terrible situation under the conditions described by the LW. Again, there was nothing anonymous about the communication. The absence of tone of voice, words said
      or not said, is not an easy thing for anyone to endure…specially this LW, who was in great need when this letter was sent to Cary.
      If someone has a ‘nut job’ of a person that would run out of a restaurant…at least this person is revealed via the crazy reaction presented in your fantasy.
      Most of us would like to know whether we are getting support or not.
      Not knowing is a terrible state to be left with.

      I still hope LW got something better than what you conjured up. ANONYMOUS communication? It didn’t exist in the letter sent to Cary, by this LW.

  3. I realize this LW’s situation is from a classic column. Cary, wonderful, caring and very reality based response.

    I just wanted to add a point. If a person only has an e-mail relationship with another, is that e-mail friend, the best choice to share very personal information with?

    And, why is a relationship just one that uses email as the ONLY mode of communication?

    I sincerely hope that LW found some support in LW’s personal life…family, friends…found people inside support groups that a friendship could develop. And, when in need, keep trying to connect on a deeper level…in fact, connect as deeply as one can, before there is a need.
    I agree with Cary. There are no guarantees on how someone will respond, about anything. But, a community of caring people begins with connection.

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