Should People Conform to Our Disability?

[Carrigon]

I'm asking this question because I was out with a friend who has our illness, and she's always bugging other people. Like, we were out to dinner and she kept complaining that the waitress shouldn't be wearing perfume. And yet, she was the only one bothered by it. I wasn't even bothered by it. And she was going to actually tell the waitress not to wear perfume anymore, and I stopped her. I said, look you're the only one it's affecting, and it's not right to be upsetting the waitress like that. Maybe I was wrong and she should have said something? I don't know. But it's not something I personally would have done. I'm more the suffer in silence type.

And then my friend told me that when she was at work on Friday, two men were talking loudly and it bothered her with the sound sensitivity, so she actually went over to them and told them to lower their voices. And that right there, I didn't think she should have done it because once again, she was the only one bothered by it. And my guess is, they were talking normally, she just had a bad sound sensitive day. And I wouldn't personally do that, I'd just try to get away from them or sit and suffer till they were done.

Should we expect normal people to have to change their behavior to accommodate us and our disability? Is that fair? The problem is, we have so many sensitivities, that I actually do not think it's fair to impose them on healthy people. You can't expect regular people to not wear fragrance, wash their clothes in perfume free stuff, wear dark colors because the bright ones set off your sensory input, speak in hushed tones because the sound hurts you, the list goes on. I just don't see how that's right. I'd rather stay to myself.

So what do you all think? Should healthy people have to conform to us? Not your close friends and relatives, but regular people out in the world.

 

[Wonko]

No.

They are not ill, we are. Everyone shouldnt stop living their lives as they see fit just because we are ill. Obviously there are limits, and people who break these limits, but breaking these limits would offend/upset/inconvience healthy people as well.

Reasonable consideration for others can only be taken so far before it becomes absurd. To make up random figures (as my brain doesnt do work ATM), in an average town there's 50,000 people, out of which 5 have ME or MCS, these 5 mainly stay indoors but occasionally venture out, the idea that the other 49,000+ people should adjust their lives so that on the offchance of randomly meeting one of the 5 people who may be adversely affected by their choices they dont is luducrous.

 

[Esther12]

I agree with the above. We all end up inconveniencing one another in different ways, so it's best to try to respect the freedoms of others as much as is possible, but I also think the the uncertainty and stigma that surrounds CFS/ME can make us less willing to ask (but not demand) for consideration from others than would be the case were we to suffer from a more respected/better understood condition.

With a condition like CFS/ME, it's really hard to know what you are entitled to ask for; what rights or opportunities it is reasonable to expect; or how 'successful' one is as an individual. I think that all this can affect how willing we are to ask for concessions from others, and it's very confusing.

(I also think that it's far too easy to be overly demanding in the name of 'disability rights' but I'll avoid too much discussion of that, as I only wanted to make a one sentence post, and have now spent 10 minutes trying to find a way to extricate myself from this complicated topic).

 

[maddietod]

I think it's up to us to find places to go that feel safe, without asking for accommodations beyond 'normal' things like for food allergy.

It's unfair that so many of us can't work - for all sorts of reasons - but if we can't handle our workplace, it's our problem. Maybe our supervisor can help us in some ways, and maybe not. If not, maybe we have to stop working (there).

This is a difficult illness, but that's no excuse for spreading the misery around. Your friend sounds pretty self-centered to me.

 

[Carrigon]

That's pretty much my feeling on it. She's overstepping. And this goes on every time I go anywhere with her, she has to find something to make a scene about. There are times when we'll be out at a fast food place and she will make me get up and move up to three times because the seating is bugging her. She doesn't want to sit near the window, she wants a booth instead of a chair, the sun is now in her eyes. The list goes on and on, and seriously, it gets annoying. And she'll be the only one in the place playing musical chairs. And then she'll find something about the food to complain about and go up and bug the cashiers.

But I do think it's overstepping to expect everyone else to conform to you, even though I personally suffer the tortures of the damned with the light and sound and other sensitivity. I just don't think it's right to be trying to get strangers to conform to you. It's different when it's a living situation, where I was living in a building where people would blast stereos and be smoking drugs and the drug stink would be coming into my place, that's totally different, even healthy people would be complaining about that stuff. But regular things like telling someone they shouldn't wear perfume, that's just overstepping.

 

[Sallysblooms]

I hope I never complain that much. You just have to find places that work for you. Even people that are healthy don't like it at all places they eat etc. We justl find places we like, quieter, cooler, etc.

 

[SickOfSickness]

It depends a lot. With strangers, no, rarely. She was over the top with it. It would make sense if the strangers were being loud in a library, smoking in a place that doesn't allow smoking, or that kind of thing, where they are clearly disruptive.

I think family, roommates, coworkers and friends should conform to some degree. And especially a boyfriend/girlfriend/spouse. Still, it has to be within reason and done in a pleasant agreeable way. The ill person should conform as much as possible too.

 

[Ocean]

I don't think anyone "should" conform, as in they ought to, but I see nothing wrong people asking for accommodations. If the people choose to accommodate then great, and if they don't then that's that, and it's their choice. Unless there is a legal requirement for accommodations in which case of course they must do so. I personally wouldn't probably have made the same complaints as your friend. But in situations with friends, family, neighbors and such, I think it's fine and normal to ask if people can accommodate you if possible. The worst they can say is no, and maybe it isn't a big deal to them and they can accommodate, which is a win/win. So I guess I think it's fine to ask but not to expect that people will or should agree. I think it's never a bad thing to ask for your needs to be met, but one can't expect that people will agree to or be able to meet them.

 

[Valentijn]

I don't think her behavior has much to do with her illness. I've known people to exhibit similar behavior, without any underlying medical problems.

To some extent, I think we can learn to accept things as temporary annoyances, instead of focusing on how much we dislike those things. It's a pretty essential coping skill with sensory sensitivity, and I think it's our responsibility to learn that skill, instead of demanding the world change to accommodate us.

 

[Wonko]

TBH Im a little in awe that she has the resources to do what is effectively initiate a confrontation if she's being caused functional problems, I certainly dont in that situation, if I cant deal then I leave. Thats not to say, as implied by my post above, that I agree with her perception that the world should adjust to suit her in preference to others, it's just that I find it amazing that she can actually do this without it havign a higher cost to her than either ignoring the situation or leaving.

 

[Sallysblooms]

Oh, I do ask if a restaurant can turn music down a little and they ALWAYS do it. Things like that are easy. Being nice about it is good too. You can't tell everyone to be quiet though, ha. You can go early to eat and that makes it more quiet. You do what you can and be nice.

 

[Carrigon]

TBH Im a little in awe that she has the resources to do what is effectively initiate a confrontation if she's being caused functional problems, I certainly dont in that situation, if I cant deal then I leave. Thats not to say, as implied by my post above, that I agree with her perception that the world should adjust to suit her in preference to others, it's just that I find it amazing that she can actually do this without it havign a higher cost to her than either ignoring the situation or leaving.

She's not as sick as alot of us. She has it halfway. She can still work part time, and has never been at a point where she couldn't. She gets POTS symptoms, but not to the point of faintness or where she really has to lay down. But she gets numbness in the arms and hands. She is MCS, and has lots of allergies to stuff, IBS, and sensory input problems, light, sound, scents. And her energy level is pretty low. Her part time work is only about two hours a day, and after that she has to rest for alot of hours. But then she bounces back and can do other stuff. If she pushes it, she gets sick. So she's sort of an inbetween/borderline case. She has alot more energy and stamina than I do.

What I am noticing is, as time goes on, her sound and scent sensitivities are getting worse and that's why she's trying to get other people to conform to her. And yet, she doesn't understand when I tell her that I cannot do any kind of work where I'm making phone calls because the sound of all those voices in my ear is too painful for me. I'm rarely on the phone. She thinks I should do part time telemarketer kind of work from home, and I can't.

 

[Sallysblooms]

Has she tried Lipo GSH and other good supplements for MCS? Also, did she see someone about her neurotransmitters for sound sensitivity? Seratonin is important for that. There are so many ways to at least improve.

 

[Esther12]

It is difficult to judge another person when you have only a limited understanding of their afflictions - I'm sure we've all had others judge us in ways which we felt were unfair. It's even harder for those of us who have never met her! It's best to try to remember how difficult it is for us to understand one another's situations.

 

[November Girl]

I don't think her behavior has much to do with her illness. I've known people to exhibit similar behavior, without any underlying medical problems.

Bingo. I've known a few people like this, though few of them would go up to perfect strangers to confront them!

 

[November Girl]

Now I may understand her a bit better. For years, when my sensitivities were at their worst, I really thought that other people were being extremely loud, or drenched in perfume. I'm not sure why I finally realized that the real problem was that my sensitivities were exacerbated for some reason. (This exacerbation often lasted for months or years, but it has fluctuated a lot.)

"What I am noticing is, as time goes on, her sound and scent sensitivities are getting worse and that's why she's trying to get other people to conform to her."

 

[Carrigon]

This is why I wish we had places to go just for people who are MCS and have sensory input problems. But other than a quiet, dark room, I can't even imagine how they would create a place. Bright light hurts me, white walls reflect the light and make it worse. I'd probably need a sterile, mold free, scent free place, with no noise. Sadly, it really does come down to a dark, quiet room.

My friend thinks that just because she is better than me, that I should be capable of more as well. She doesn't get it that I nearly die when we go out to eat. I never say anything, but I can't stand going into any place to eat because of all the sensory input stuff. I often have trouble walking from the car into anyplace we go because of the POTS or just being sick in general. But I never say a word. This last time I did make some noise about the seating being too far from the buffet, but she didn't really understand. And she just doesn't get it that the last time I volunteered, I ended up so sick from it that I really did collapse on my front lawn and break bones, and I couldn't walk for four months. I am not well enough to volunteer or work outside the home. At yet, she will still suggest it.

I go out with her because I have no one else, and I just feel like when am I ever going to get to go anywhere if I don't. I rarely leave my apartment as it is. I have zero life from this disease. So for me to go out, it's a big deal. But then I pay in spades for it.

 

[Revday]

Dear people,

This thread reads more like a slam book from Jr. High. It's awful you should talk about your friend like this. And some of you know her? How awful for her.

I have found that those who will suffer in silence areoften embarrased by their limitations, like to feel like victims, or hate themselves. You pick.
My guess is that your friend(?) feels completely powerless in a world that is making her sick. The only thing left is to try to advocate for herself in the only way she knows how. And she does hope that the people I'm talking to will not make fun of her and write attacks on my character and my psycological state on-line.
Be kind, we all have our struggles.

How come you are not standing up for your friend? Helping her find better ways to inform people. I bet she wouldn't feel so scared and defensive if she thought her friends understood.

Not everyone is the Canary in the mine cave, just the courageous ones that sacrifice themselves for the cause.

I don't know any of you. If your friend needs you, give her some love.

RevDay

 

[Ocean]

I had the same thought Valentjn. I know people who are very outspoken about making complaints and requests when out at restaurants, movies and so on, and they are healthy. I imagine if they were sick they would do the same thing but the requests would include those related to their health also. On the general question of it's appropriate to ask people to accommodate someone heath or other needs, I think it's fine. On the specifics that Carrigon presented, I see those examples more as just someone's personality trait than something related to having CFS/ME. Not sure if I worded this in a way that makes sense, I'm really out of it today.

 

[Ocean]

RevDay,

I have trouble judging the friend too. That's why I responded in a more general way about requesting accommodations in general. I really don't feel it's for me to comment on the friend's behavior.