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

[Peaches]

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.

 

[el Jay]

This is honestly the exact same problem I have. Loneliness from a lack of friends, that's caused by the fact it's difficult to feel any sort of connection to other people when they don't know my past and what I've been through.

Most people I associate in real life right now are at my college (a small catholic college), so the vast majority of them seem like they haven't really had problems like that. I've never tried bringing it up, mind you, mainly because there's never been a suitable time to do so. I still don't know how to let people know in a way that won't seem weird and forced (since that would just be defeating the point), and it keeps me from feeling like I can connect.

Unfortunately I don't have any advice or suggestions. All I can do is let you know you're not alone in this.

 

[Lady X]

Hey, I know how you feel about having an illness that people just want to blank.

You don't say what your illness or disability is, but I'm thinking because you talk about having to "tell people" that its something not visibly obvious, like say a hearing aid would be to indicate a hearing disability for example.

I have Inflammatory Bowel Disease, one of those illnesses that can be excruciatingly painful and at times really debilitating, but that has no obvious outward "signs" to other people, and isn't something people understand (or want to). If I hear one more time "but you don't LOOK ill", or get one more snidey look or remark when I use my RADAR key for a disabled loo I may scream :club:.

At first I just told work what they needed to know, but now everyone knows that I have "stomach issues" and that if I appear grouchy its not that I'm being generally grumpy but am probably in a lot of pain, and if I eat the wrong thing I will spend all day being sick. They also know where to come now for the decent painkillers lol.

I guess I've dealt with it now by making a bit of a joke out of it in certain circumstances. Folk at work know I have issues and allergies and that food and pain often go hand in hand for me, so while they have a bit of banter (I get called "dairy queen" in relation to my dairy allergy for example) I know they are all understanding of it.


As for new friends though.... yeah, it is a toughie. It's an awkward one to tell people about and I do find that people can be put off easily by hearing that someone has an illness. As there are burdens to us from our conditions, its almost as if they don't want that burden to transfer onto them I often feel. When I developed my illness, it was an horrendous year of being very ill. MY friends dropped like flies around me as I no longer went to the pub. Made me pretty sad to see how shallow and baseless those friendships had actually been. The "friends" who did stick around seemed to do so only to screw me over and take me for a ride, then did one when they had satisfied that desire.

So now its mostly online friends, and a few "real life" ones (although I would consider my online friends real friends of course, its just poverty of terminology there)

 

[Mike413]

I have had so many problems in my past it's not even funny. I am on disability at the moment even though I don't really feel all that "disabled."

My biggest problem other than low self esteem, comes when people ask me the inevitable "what do you do?" question. I feel like a dope if I say "well I'm on disability" but on the other hand I don't really want to lie either. It's a constant issue for me.

 

[Badjedidude]

Don't tell anyone unless you have to.

Why would you?

Just live with it the best you can, and only tell others if they have to know for some reason.

 

[defenestrate]

I've been trying to contemplate this since reading another thread on terminal illness. Sometimes I try to do silly things to persuade other people into pulling their head out of their ass to look at things differently. (Come on people. Don't discourage others from speaking about pain.) This time, I think, I'll just try to honestly state my own beliefs and share the inspiration I have seen.

The only reason we don’t open our hearts and minds to other people is that they trigger confusion in us that we don’t feel brave enough or sane enough to deal with. To the degree that we look clearly and compassionately at ourselves, we feel confident and fearless about looking into someone else’s eyes. ― Pema Chödrön
Try to gauge how compassionate people are. People are sometimes cruel, judgmental, and are too far stuck in their ways to look at things differently. Within the first three seconds of talking to someone you will understand their profession. People identify themselves through their work and accomplishments. Without work, people begin to feel frustrated and isolated. When two close acquaintances died from cancer, they made the personal decision to remain secluded in their illness. Only close friends where aware of their ailing health. Roger Ebert recently passed away from cancer and initially had a similar decision. After losing his voice, and going through several surgeries, Roger came up with an idea; Society places too great a value on appearances and health. Illness is merely another part of the human experience and hiding from it won't change the situation. Compassion can sometimes simply be understanding and accepting humanity’s frailty. Not everyone is capable of that compassion. But there are people who are. There are many people who are compassionate. I wish that I knew many of them to personally introduce them to you. But I think that if someone appears unreasonable, maybe even disgusted by an illness, I would politely remind them that I'm okay and there is more I have to offer to other people.

Whatever the case with your own circumstances; No one wants to hear this. That some of us will not recover completely. It’s terrifying to utter such words. It's an ugly thing for those of us faced with such a potential reality. In order to heal on a emotional level, if not a physical one, we must mourn what we have lost and embrace the other aspects of life we've kept. We can identify ourselves through other means...

 

[SophiaGrace]

Depression support group time?

 

[Regumika]

Someone has brought to my attention that there are situations in life that we think we are okay with, but when the time comes we really are not okay with it. Say like a relationship, and the guy talks about how he would love to have a child. Then the girl gets pregnant and now he's faced with reality and goes "uh.. actually i cant handle this.." and jets.

the same can be said for many things in life. but lets talk about the issue described in the OP. You have an illness (not a disability). You dont tell people of the illness because of pride and because people have avoided you once the illness is known. Now you have no support because you have been keeping it secret. You HAVE tried to find people who can understand, but that have not seem to be working out.

I went to groups like Coda and ACA to find peers, but their issues were a bit too intense for me

this right here, is where you are at the side of giving support, but you backed out (because it is too much to handle, as mentioned above). So now you can probably understand how people back away from your illness.

solution? keep trying to find people that are able to support you, people that are okay with it. you cant get that unless you tell people about the illness.

 

[el Jay]

Don't tell anyone unless you have to.

Why would you?

Just live with it the best you can, and only tell others if they have to know for some reason.

This isn't really a realistic thing for some people who've gone through difficult things. Their past and suffering is as much as part of them as anything else, and is just as important to them when it comes to being understood and recognized. Denying a disability or suffering for the sake of others isn't something anyone should have to do.

What I went through still has a tangible impact on my life today, despite it having ended over a decade ago. Things I'll never get to do, experiences I'll never have, and the anxiety and depression I still endure that continue to cause problems for me going forward. To expect that I can call someone a friend without them knowing about that part of who I am would be silly.

Depression support group time?

Where can you find one of those, anyways? There was going to be one at my college, but the professor running it couldn't find enough people for it, sadly enough.

 

[Peaches]

the same can be said for many things in life. but lets talk about the issue described in the OP. You have an illness (not a disability). You dont tell people of the illness because of pride and because people have avoided you once the illness is known. Now you have no support because you have been keeping it secret. You HAVE tried to find people who can understand, but that have not seem to be working out.

I went to groups like Coda and ACA to find peers, but their issues were a bit too intense for me

this right here, is where you are at the side of giving support, but you backed out (because it is too much to handle, as mentioned above). So now you can probably understand how people back away from your illness.

solution? keep trying to find people that are able to support you, people that are okay with it. you cant get that unless you tell people about the illness.

Well, it's not that I mind giving support, actually sometimes I volunteer at a phone helpline, but one thing is to give support and another is to have a two-sided friendship because you are both stable people AND you have something in common, I am sure there must be plenty of people like that at CODA meetings but I just didn't happen to meet any in those occasions. Sorry if it sounded like I despised the meetings, it really is the opposite, they are wonderful and people there are really brave to go face their issues, but, yes, what can I say, I need a minimum of emotional stability in my friends, and also something to talk about aside from psychological issues and with those I met there was no fit. Anyway, I am glad we got to mention those meetings, I am a big fan

By the way, a chronic illness that doesn't let you walk or work normally or have a normal life for probably - forever IS a disability.

And not taking about it is not really about pride, although there is still an inch of that, that is difficult to get rid of it completely, the reason behind that is rather knowing that most people won't accept it, and a way to avoid the pain of rejection.

---

Depression support group time?

that's a great idea, but there are none here where I live at least in a language that I can understand, have been looking for some for a while

---

But I think that if someone appears unreasonable, maybe even disgusted by an illness, I would politely remind them that I'm okay and there is more I have to offer to other people.

Whatever the case with your own circumstances; No one wants to hear this. That some of us will not recover completely. It’s terrifying to utter such words. It's an ugly thing for those of us faced with such a potential reality. In order to heal on a emotional level, if not a physical one, we must mourn what we have lost and embrace the other aspects of life we've kept. We can identify ourselves through other means...

yes, that's exactly why I think most people don't want to hear about it, it's not disgust, it's fear, superstition, even by talking about it they are reminded of their own mortality and they don't like that.

 

[defenestrate]

I have an idea.

Normally I would advise people to investigate the DBSA to find local groups in their area. But from the sound of things that really isn't much of an option... I know that some locations utilize a bureau of behavioral health, which typically offer private not-for-profit organizations to help those in need...

Are therapists available in your area? I'm sure one could refer you to a support group of some manner.

 

[PyramidHead]

Well, it's always a game to tell people about special topics that involve us. Secrets are even harder to tell. But should it really be a secret? I mean, it's not like you killed someone or anything like that. It's a disability and that's a part of who you are and, well, I think that is nothing that should make you less worth as friend, co-worker or as a human being yourself.

But, we shouldn't forget that even while a lot of people are "normal" in a good way, a lot are as well "normal" in a bad way. Which includes being dumb, ignorant or self-centered, just to name a few. So, you should make up your mind before you tell any of them, and remind them to keep it a secret. Or you give a **** about it, tell it freely to anyone who asks or when you feel like telling it and who do has a problem with it, well, that person surely is no good friend, co-worker or human-being. (my opinion)

But, it surely shouldn't be said like "Hi, I have a disability"
Try to bring it up when the talk goes in that way. Like when people talk about problems, sicknesses... I don't know the kind of disability, but when you hear something similar, feel free to join in.

By the way, I felt like I read that someone wrote that a disability is every chronic illness... I have to object, because it surely isn't like that. For example, I have a tremor, which in very hard cases can be a disability, but in general, it isn't. Many people even are said to have the "very light" version of it, which sometimes isn't even seen as sickness by the people who have it.

 

[Regumika]

By the way, a chronic illness that doesn't let you walk or work normally or have a normal life for probably - forever IS a disability.

and it comes out! well, i wasnt trying to beat it out of you, but your OP was.. with no fault of yours.. vague. I am actually surprised that you could.. hide(?) this issue.

I have a friend just like you. he has a case of.. scoliosis(?) i think (maybe called something else). something to do with his spine, and he cant walk, and his motor functions for his hands are limited. He doesn't hide it, but he also doesnt broadcast it. He does have short temper, but thats something else altogether. where was i going with this? im not sure.

i apologize if pride was.. a negative word, i was thinking more like.. keeping the 'image'. dont get me wrong, we all have images to keep. you know like.. behaving better at someone else's home. anyways.. we live in a world where people judge. they shouldnt, but it is what it is. there are those that are objective still. just need to find them. and i wasnt putting you down for 'turning those people down', but just kinda remind you that how you see some of those in the group is how others might see you, until proven otherwise, right?

 

[Smokey]

I was born with a hearing difficulty in one ear, and having just worked in a hotel my hearing was tested to the max... A few people caught on without even being told however my ******* sleazy manager on the night shift took it as a sign of weakness so would constantly make fun of my disability.

The best form of revenge is to live well I have found, so thats what I do and besides, I lost count of the amount of times that idiot ran out of petrol on the way home.

Start with telling those you are comfortable with, then come to trust them... not everybody will understand you or accept you but is entirely their problem not yours, you cant go wrong if you start on the right foot and be honest.

 

[reloadlife23]

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.

..................................................................................................
Hi Peaches,,I'm a little late, but I just saw your post.
I believe most diseases can be cured if our minds are well. The mind can keep us well and also heal the body.
We need to learn that resentment and judgment will keep us ill.
What are you doing to improve your mind.?

 

[Peaches]

i apologize if pride was.. a negative word, i was thinking more like.. keeping the 'image'. dont get me wrong, we all have images to keep. you know like.. behaving better at someone else's home. anyways.. we live in a world where people judge. they shouldnt, but it is what it is. there are those that are objective still. just need to find them. and i wasnt putting you down for 'turning those people down', but just kinda remind you that how you see some of those in the group is how others might see you, until proven otherwise, right?

Hey Regumika! I must tell you, I did take the term "pride" the wrong way, actually I have been thinking about your previous post for a week, the one about the Coda meetings, and it got me thinking, like, REALLY thinking, and it is true, if you want to be accepted you must be ready to accept others, no matter what, no limits.
I had a history of making friends with really deranged people so I guess since years I have been trying to protect myself from repeating that pattern, but that shouldn't mean falling in the opposite extreme, anyway, going though some major reality check right now, so thank you for your comment, I mean it (after some days of digestion).

---

..................................................................................................
Hi Peaches,,I'm a little late, but I just saw your post.
I believe most diseases can be cured if our minds are well. The mind can keep us well and also heal the body.
We need to learn that resentment and judgment will keep us ill.
What are you doing to improve your mind.?

---

lol, what are we all doing to improve our minds? I faced lifelong terrible family issues, forgave everyone, brought those relatives who were open to it to group therapy, stopped looking for negative people and started looking for positive people, started cultivating a disgusting optimism (with some falls, I agree), dropped most of worldly ambitions, meditate daily, try to do something nice for someone everyday, I will never be a great warm person like some people here but getting closer to being an average decent human being. At least this stupid illness did come in handy for something for cleaning up the dust and spiderwebs.

No, not all diseases can be cured, but you can be in peace no matter what, I haven't quite reached that point yet, it's the loneliness that gets me, I think you need to be really enlightened to just accept everything, no matter what. We never know what is for the best, it's true, still, it's really hard to just enjoy illness (that I understand is the best approach ever).

What are "you" doing to improve your mind? (honestly curious, no sarcasm)

 

[defenestrate]

I think going back to the original question is important. Especially if loneliness is really the crux of the problem. There are therapists who work with the disabled. Having a therapist is an invaluable support for working through these problems. Problems such as how to build new relationships, how to be involved, and how to disclose a disability. I think when disclosing a disability, it's important to be sympathetic. Sympathetic that other people might struggle to understand, and may need some coaxing to feel comfortable. It's easy to feel defensive when a person is being superstitious and not very understanding. Sometimes being sympathetic means addressing their fears and uncertainties.

Maybe I'm far off the mark here. Just something to think about, I still believe enlisting the aid of a therapist is a good choice.

 

[cicerolion]

If its not something that is visually recognizable to others, you should keep it to yourself (outside of the anonymous confines of the internet that is). Until you have actually become close enough that you trust the other person (trust me, that should not come quickly), its best that they don't know. People who haven't had health issues do not properly understand how that affects a person, and, if they are young enough, they don't care. However, there are many who will use it against you. People will assume that you can be passed on in many professional and social situations. Also, even if you think you can trust someone, its important to think about their needs. Illness is something that is naturally hard to face. People who haven't had it forced on them yet aren't great at handling it. Even if you reveal your illness, don't expect the healthy to help you bear that burden. It isn't fair to them.

 

[Tiina63]

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.

 

[duff]

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 Tiina63 !