How to tell "normal" people about one's disability?

[perfanoff]

Well, this is the conundrum: after becoming ill and severely disabled nine years ago, I made the very though decision to NOT disclose the illness to all those who I knew because of work, and it worked out in the beginning because I had a couple of friends to talk with, but for the last three years in a new town I only met people through work connections and now that part of my life is quite secret, hell, I didn't even tell this forum.

It made sense not to disclose it in work circles because there is a lot of suspect about severe illness, and it paid off because I managed to maintain professional connections even in the years I took off when extremely ill, and since three years the improvement has been enough to be able to fake normalcy, working part time or with flexible hours, not walking much and in general having half (65%?) of a normal life, that half kind of fulfilling, the other half spent alone in pain or discomfort, waiting to get better and trying not to go crazy in the meanwhile.

The price to pay for that silence is that now I find myself surrounded by people who have no idea of how my life is, on top of the illness I think I am developing depression and not once in three frigging years I have been able to talk about it with someone I know socially, let's not even mention receive a visit. Until one year ago I survived thanks to one very precious friend, but she had a baby and disappeared for another reason.

I did try to tell a couple of times to others, and those people disappeared immediately; after testing the waters I know for certain that most (let's say all who I can think of right now) have horror of and disgust for illness, and there is nothing to do about it.

I was hoping it would improve definitely and that one day I'll be fine, but now it's clear that probably is not going to happen, so I must change strategy and tell, but I have lost all courage: how would you tell to someone that you are a 40 years old disabled lonely person with a blossoming depression and still maintain some dignity? If others are happy also with phone and chat I can give a lot, in spite of the "half life", and I am generally a loyal and supportive friend.

I went to groups like Coda and ACA to find peers, but their issues were a bit too intense for me (also, in the case of Coda, unrelated), and it felt quite artificial to go there "friend-hunting", but I feel like I am dying with this loneliness and that if I don't reach out something bad will happen. I am trying other circles (musicians, religious) hoping to meet people more sympathetic to human weaknesses, but I forgot how to just say "Hi, I have a disability" nicely.
There are no groups about my illness, that was the first thing I looked for, and I don't know where to find other people like me, with limitations but also the will to fight them and many interests.

Any suggestions?

Sorry for the very long post, I try not to plague the lovely people of this forum with my struggles, and again I come back with more, I am so sorry, if it gets annoying please let me know (with a PM maybe?Plz?) and I will stop. Wish I had more moments of good mood to give better feedback on others' posts.

I can relate. I have a cosmetic illness I won't advertise for the same reason.

It's been an eye opener. Political correctness mandates that people aren't rude and pretend to ignore it, but the reality is that virtually everyone judges. Myself included.

Do NOT disclose to anyone but to people you feel close to. Do not give the chance for people to wrongly judge you because what illness you have does not impact how good a friend you can be.

Also, I take offense to that you don't consider yourself normal. I do.

Are you looking for anyone to chat with here? If you have skype I'd be glad to.

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Hello peaches, being lonely, isolated and disabled is a hard situation to be in and I admire you for struggling on with no support for so many years. Unfortunately, as you have found, some people are put off by your situation. Sometimes it will be because they have no experience of illness so can't put themselves in your shoes, or out of fear that they will be expected to give you support when they (for whatever reason) don't want to do this, or because they are too scared to imagine your situation as they would not want to be in it themselves and so want you to go away so that they don't have to think about what it must be like to be in your shoes.
Support groups can be problematic as most people go because they want support rather than to give it. They may not admit this, but I have generally found it to be the case. You said that you are trying other circles now, and maybe something will work for you in one or more of these. It might be a good idea if you wait until you know some of the people a bit better before telling them about your disability. This way they will see you as an individual and not just as a label, and they won't feel that you are 'making demands' or anything before you know them. I'm not saying that you are making demands, but I have learned from painful experience, being in a similiar situation to yourself, that just the fact that you are lonely and have health issues is enough to make some people feel weighed down and to run away fast.

Welcome back!

 

[LeaningIntoTheMuse]

This is really something I struggle with.

People assume that mental illness means that you're going to act crazy. When you have an anxiety disorder, it's not exactly craziness you feel, but the fear....and when you try to describe the fear to people, they assume that you are something that you're not, and place you in the same category as the severely mentally ill.

I frankly don't care anymore, because normal is relative. But anybody who would judge me for not being up to their standards of "normal", has got a skewed view of what humanity is all about. It's not about judging people and putting people down. That makes you an *******.

 

[Naleena]

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