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How far should you go for a "disabled" family member...


sammi87

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I have a family member in her late 20's who has always been difficult and a bit self-centered. A few yrs ago, she developed a mystery illness that she claims prevents her from work (professional or other). However, she IS able to go on vacations, shop for clothes, go out to dinner ect. In my family, I am the one who organizes/hosts special events and Holidays. I love it, but it is a lot of work. And now, Alice needs a LOT of special accommodations. Basically, she will request a time change, venue change, insist one of us drive her (and she will be a MINIMUM of 30 mins late) and then need to be waited on the entire evening. Any refusal will have Alice and her devoted mother claiming we are "leaving Alice out".

 

The Holidays are here and I am starting to feel frustrated with Alice already. Alice believes when someone has an illness, you should have endless sympathy for what they're going through... But my feeling is that Alice needs to find a way to adapt to life rather than expecting the entire world to adapt to her yr after yr.

 

What do you guys think?

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What are her symptoms? If she honestly has something wrong you of course want to do can but at the same type when someone constantly complains it can get very irksome. I don't understand why, with enough notice she cannot make plans for her own transportation.

 

I would just remove yourself from that part of the equation at least. If other family members want to go 30 mins out of their way that fine, but you don't have to.

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You say disabled with quotations, so I am assuming you don't think she really has a disability?

 

Be careful making that assumption. Sometimes people don't fully undersrtand someone's disability but that doesn't mean you shouldn't be accomodating. can you talk to your mom or someone close to her that would be able to validate whether she truly has a disability?

 

I mean, if she really is just being self-centered...you don't need to do everything for her all the time...just tell her that next time she asks you...

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Hi emma, I say it in quotations for a few reasons. One, I have known her to fake illness in the past to get out of something she didn't want to do (at the time we were very close and she confessed it freely). Two (and something mhowe has hit on above)...her symptoms are consistently inconsistent- it always prevents her from doing something she doesn't want to do...but never gets in the way of something fun she wants to do. Third, she has been seen by Dr's and they have given her a clean bill of health. I know Drs don't know everything...but this in addition to the other two makes me 90% sure this is her way of skipping out on work and being able to smoke pot all day. As she often wished she could in college!

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Moon, her symptoms are random but intense cramping(most often in the neck or arms) and occasional nausea.

 

Definitely you are right about the ride. I have not agreed to give her a ride since the time we showed up...only to wait for over an hr for her to come out of the bathroom!

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One thing I learned about disabled folks is that they resent special treatment and want equal treatment. Your cousin sounds like she is milking whatever she has to an extreme just because she can and her mother lets her. So unless she is in a wheelchair and your venue doesn't have access for that, then she has no reason to demand changes. Sometimes you just have to say "No!" both to her and her mother. There is a big difference between making genuinely necessary accommodations for someone and letting them get away with being a jerk.

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Thank you Dancing, that is very helpful. She is not the only family member we have had (including myself) who has gone through a period of being ill/injured/incapacitated. And everyone else fought like heck to get better and have as normal a life as possible in the meantime. Alice on the other hand, seems content to just sit back and let others take care of her.

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Hi emma, actually it has been much talked about in the family since it has gone on now for several yrs... Her mom believes completely that she is ill (in her mind, Alice can do no wrong). Everyone else is confused about what's going on with her and has the same doubts I do about the validity of this illness.

 

But I guess for me, it's not really about whether she's truly sick or not... Even if she is ill, I think it is too much for ANYONE to expect an entire family to drop what they're doing (in a non-deathbed scenario) for yrs and take care of you entirely. While I have no problem making occasional, reasonable accommodations, I think it's wisest for someone in her situation to learn how to help herself.

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I think Alice has hit onto the con of all cons. If she's well enough toto go on vacations, shop for clothes, go out to dinner ect. then she's not sick. She's a hypochondriac at best or worse a con artist who's found out that if she cries sick you'll lay down and let her walk all over you. Stop doing anything for her, tell her she needs to go get herself some medical help and you aren't available this year, because you're busy. Then break contact. If other family members complain to you tell them you're happy to hear they've finally realized Alice needs help and since you're busy they can contact her and see what she needs.

 

Heartless? No, not when it's a con artist, which is what I think Alice is. I've been sick, to the point of death's door and shopping and vacations were the last thing I wanted to do. In fact, that's how my family knew I was indeed sick when I turned down a vacation cruise that my uncle was paying for everyone to go. Also right now I"m taking care of my elderly mother who is disabled and it takes everything I have just to get her to go to her doctor's appointments let alone out. So nope, Alice isn't sick--not in the conventional sense anyways.

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I don't know "Alice", so I can't speak to whether or not she is a con artist. However I DO know what it feels like to have an "invisible illness" and to have people make assumptions about you based on that illness.

 

I suffer from chronic migraines. It is a identified neurological condition. I don't ALWAYS have a migraine, but when I go through migraine cycles, it severely limits what I can and can't do and often times, many people think I am "making things up" in order to get easier accommodations.

 

For example: I can't just "crash" on somebody's couch or futon. Because my migraines can be triggered by sleep position, the hardness (or softness) of the mattress, and the way my neck is positioned, I need to lay in a bed. Anything without a proper mattress WILL cause me to get a migraine. Similarly, I need to bring my memory foam pillow with me everywhere I go. Regular pillows cause me to clench up at night and I get migraines from that too. Some people have gotten offended when I have brought my own pillow with me or requested a bed to sleep in over a couch. They assumed I was making it up in order to be more comfortable. Nowadays I just don't stay over at anybody's house if they cannot provide a proper bed to sleep in.

 

There are certain foods that may trigger migraines (such as citrus, cheese, alcohol, MSG, aspartame, caffeine, various fish, nuts and aged meats). I can eat these foods, but only when I am not in the midst of a "cycle". That means I occasionally have to request specific things or tell people I can't eat certain foods. Again they get suspicious when they see me later on enjoying a pizza (after having said I can't eat cheese). They assume I have made up these "requirements" to suit my tastes at the time. Not true.

 

I am able to work right now, but I do know people who have had to quit their jobs with chronic migraines. On the days they don't have a migraine, they can do everything that normal people can do (shop, vacation, etc.) On the days they DO have a migraine however (or when they are in the midst of a cycle) they can go days and days at a time (sometimes weeks) without being able to do or concentrate on anything.

 

There are MANY other examples: Sometimes I can go to a nightclub - sometimes I can't. Sometimes I can see a 3D movie - sometimes I can't. I have to stick to a very specific sleep schedule. Too much (or too little) sleep will cause a migraine.

 

I don't know if Alice is making it up - there is the possibility of that to be certain. But without knowing exactly what is wrong and how she deals with it, I caution on making assumptions.

 

Regardless, there is only so much you can do to accommodate someone.

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Whether she is ill or not; I find the guilt trips to be a big red flag. And the idea that the world should be continually accommodating her while she does nothing but complain. Things such as getting driven around by family members: there are cabs, and other ways in which she could be getting herself to and fro places.

 

On the whole, your description of Alice and her mother are of self centered, martyr type personalities who like to try and manipulate people with guilt trips and the like. Where she was/is ill or not: some people it's their personality! It's not about their circumstances.

 

My grandmother is like this. YOu can bend over backwards for her; it will never be enough. And you will end up feeling like a bad person; if you allow it to work on you. She has many people running around like chickens with their heads cut off trying to please her and make her happy. It doesn't work like that; she won't ever be happy you see, because the idea is to keep you hopping and at her whims. She is manipulative, and quite self centered. I am not even saying that as an insult ; it is simply facts.

So you just can't. You just have to draw a line and that is enough. That is what you are willing to do. Or this is what you are not willing to do. End of. Do not engage in it further or go into long discussions with anyone on it. Jsut make up your own mind and don't expect to receive appreciation for the efforts you do put forth with them.

 

I find speaking very directly with people like this, though it does not change them, it does cut to the chase a lot quicker on what you are really dealing with and allow you yourself to not waste time trying to guess.

 

I think Alice and her mother will just have to tell the sad story to someone else who will listen and be guilted to do what they want by it. It's won't be you this year.

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It so hard to say if she is really ill but I think the fact that she cannot work but can do all these fun things is a huge red flag. There are many things that could be wrong with here. There is a condition called hyperparathyroidism (sp?) that literally makes a person feel sick with a wide range of symptoms, often unrelated to each other, without any apparent cause. Its very difficult for doctors to figure out if a person has this.

 

Perhaps that would be a good angle to take, suggest things her doctors can look for.

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I get you! I suffer from severe migraines too and people think I am " making stuff up." " Or it can't be THAT bad "is another thing they sayAlmost makes you want to wish them the worst migraine from hell on them so they would understand.

 

I also wanted to say that not all disabilities are physical. Some are Mental and some are emotional. My son is learning disabled yet physically almost perfect. No one would ever know he was disabled.

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I don't think it is really about whether she is sick or not though.

 

I think it is about OP dealing with her personally, as a personality and difficult person.

 

And doesn't she sound difficult?! To me, she sounds like a huge pain in the ass! I wouldn't even do a thing for her, honestly.

 

There are people who are literally on deaths door and they aren't like this. People with serious struggles. People with minor or more major ones - health wise and otherwise.

 

It really does come down to the type of person you are dealing with. And she sounds like SOB.

 

By the way; how can she afford to go on vacations and shop a lot and be driven around (bet she doesn't offer money for gas either,right) if she isn't working? Where does the money come from??

 

Sounds to me like she is a mooch and found a free ride in being 'sick'. Cause look how everyone ran to the rescue to defend that she 'might' be invisibly sick.

 

She might be. And then she might not be. But it still wouldn't be an excuse for her behavior. And it still doesn't entitle her to have people catering to her like a princess.

 

I'd present the holiday plans to Alice and her mother ONCE and it would be a matter of show up or don't , here is what is happening. Meanwhile hoping she doesn't show up to bithc.

 

And the original question...how far would I go for a disabled family member? I would go to any lengths. It's not even a real question in this circumstance though; the question is more "would you let yourself get manipulated by a fam member who uses disability as a reason for it?". Hell no.

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Well, I suffer from severe migraines as well and when I was really sick it got to the point I could barely move. I also have Fibromyalgia, so yes I am well acquainted with illnesses that others can't really see or don't believe exist. I don't do the fun things when I'm sick with one of these things though, not when it's to the point I have to have other people drive me around. And I don't make the kind of demands one usually only hears rock stars and spoiled actors making either. I go out, I get done what I have to, and I lay low and take the medical treatments that help until it passes. The last thing that I am ever going to want to do when I'm feeling fatigued, dizzy, ill or in pain from a migraine is go shopping or on vacation or to other fun things.

 

That's why I don't buy that this woman is ill. From personal experience shopping when you have a migraine is agonizing. Ditto that special bone pain and fatigue that comes from fibromyalgia.

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Honestly? It sounds like she's lying, or at least exaggerating. People with real disabilities, physical or mental, actually struggle even if it's not all the time. It's far too convenient that she can only do "fun" stuff, including travel (which by the way, would be hard for most with disabilities) but somehow can't work? Ah. Must be the life for her.

 

Anyway, that's all I have to say. I wouldn't let her disability guilt you into doing things for her. She is demanding and pushy and clearly thinks she is the center of it all. Don't give in and make yourself miserable for her sake.

 

I think it would be best for you to distance yourself from her. Even if it hurts her feelings. People like her always manage to find a few people to dote on them because they like to feel needed. She will be fine, I assure you.

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My SIL is "officially" disabled, diagnosed SMI (seriously mentally ill). And I freely admit, while I acknowledge she does have issues, after living with her for over 2 years, it's a pretty safe bet that she's a lot more capable than advertised.

 

I would find a way to put the accomodating on her devoted mom. Let her know time and place well ahead of time. Send bus routes or taxi information with her invitation. And if they ask you to change time and place, just tell them you're really sorry they won't be able to make it, if they see a way they can be there, you'd love to have them.

 

Some accommodations are reasonable. Expecting to be waited on and be the center of the universe is not reasonable. If mom feels she needs that level of attention, mom can provide it, or she can see about getting assistance from health support, state support, or social security.

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That's the difference though, tvnerdgirl. YOU simply decline and invitation if you don't feel well enough to go that night. You don't require a dozen other people to change their plans to suit you.

 

And I would also say that your illness seems to effect you accross the board... AKA- sometimes you have to skip something FUN or TASTY that you would have liked. But like I said, Alice's illness is consistently inconsistent. She never misses a fun night...just unpleasant things.

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That's the difference though, tvnerdgirl. YOU simply decline and invitation if you don't feel well enough to go that night. You don't require a dozen other people to change their plans to suit you.

 

And I would also say that your illness seems to effect you accross the board... AKA- sometimes you have to skip something FUN or TASTY that you would have liked. But like I said, Alice's illness is consistently inconsistent. She never misses a fun night...just unpleasant things.

 

I know its passive aggressive but I would start making comments about this. If she or her mom calls because she is to sick to drive say something like, "I'm sorry she's not feeling well. Hopefully she will feel well enough next time to come." Or when you see her at an event, "I'm so happy you are feeling well enough to make it the party."

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I hate passive aggressiveness but sometimes you need to make comments like that. To subtlety point out to her that indeed, she is doing quite well if she's able to show up to parties and have fun. That's a sign of health there.

 

You can't really be direct with these things to people like that who are milking illnesses because you will always be accused of being insensitive.

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That's the difference though, tvnerdgirl. YOU simply decline and invitation if you don't feel well enough to go that night. You don't require a dozen other people to change their plans to suit you.

 

And I would also say that your illness seems to effect you accross the board... AKA- sometimes you have to skip something FUN or TASTY that you would have liked. But like I said, Alice's illness is consistently inconsistent. She never misses a fun night...just unpleasant things.

 

Again, I wasn't saying that Alice is not manipulative or that she is not using it as an excuse to get what she wants. Just pointing out that a lot of the time people might see things and misinterpret them to their own ends. Sometimes I do have to decline to go places because of my migraines. Other times, I can do them which makes some people assume that I am declining these invitations because I don't want to go.

 

I have another friend who has had to quit her job because of her migraines. Some days she is fine and she can go out and shop, and do fun things and plan vacations, etc. People see that and assume that she can work and that she is just "making it up" for the disability. They don't see the days that she is in a migraine cycle and cannot leave her room.

 

It's not so much your situation that I was posting on but rather cautioning others not to assume that all people are lying simply because they can't see the illness for themselves. It happens more than you realize.

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I guess for me though, tvnerdgirl, this is a lot less about whether or not her illness is legit. The only reason I even mentioned the oddity of her illness/symptoms is because it makes it all the more difficult to try to plan to accommodate her when her special needs change so often...

 

But as I've said before, whether your condition is chronic migraines, blindness or social anxiety- after a period of time, it is up to the individual to figure out how to adapt and live their life. Not to try to force every situation/person to adapt to THEM.

 

For instance, if you're in the midst of a migraine cycle, you simply would decline an invitation to go horseback riding and rest, right? What Alice did was tell everyone she wasn't up to it and ask us to instead pick up some carry-out and bring it to her apartment as the activity...

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