# autoimmune patients, how is your quality of life?



## Larch (Oct 14, 2015)

Beth of the dead said:


> It was isolating in so many ways. When you talk about it with people their eyes glaze over and you become one of "those people". One of those people that get a secret eye roll when it comes to dinner invites (if anyone can be bothered any more). All those complex trial and error food experiments to see if you don't poop yourself, burn the hell out of your mouth, give you a near hearty in palpitations, asthma attacks, headaches, fevers and killer joint and injury pain are relatively unseen. You look alright; slender, a face without palsy, tics or scar tissue, no swelling appendages (usually) and therefore it must be in your head. All you need to do is go out for a walk or ride a bike and see the sunshine, stopping occasionally to smell the roses (that you've suddenly become quite allergic to as well) according to some. When I was finally diagnosed with Addison's (the end result of autoimmune system turning on itself) I was really quite pissed off with all those well meant advice givers (I learned who my friends were out of it), but vindicated at the same time.


I think social isolation and being judged, misunderstood and/or given unhelpful advice by friends and family is one of the biggest themes in this thread. 

When I think about it, I mostly let go of old friendships from prior to becoming ill. It was mostly a matter of not having much in common anymore - my old friends were moving on and establishing themselves in life, but I was on another journey that they couldn't really understand or be a part of. I didn't feel good putting a damper on all the conversations about planning for the future, and I could no longer participate in most of our usual activities. I found it difficult trying to explain why I wasn't getting better yet.

Once I let go of my old friends, I gradually made an entirely new set of friends. They are awesome and unconventional people, and they are involved in activities which I enjoy and can participate in. Several of them also have chronic illnesses - and having people in my life who can understand even a part of what I go through really helps me get through the times when I feel isolated.


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## Larch (Oct 14, 2015)

s2theizay said:


> Anyway, yesterday was one of those days. I figured I could make it to work and that my symptoms were just in my head and I was being stupid. Long story short, I spent the evening in the ER and now have to do a round of steroids. If I'd stayed home in bed, it wouldn't have escalated.
> 
> It's hard on the ego. It's hard to figure out just what I am and am not capable of, and it's frustrating.


I can relate to this. I've found that it's incredibly tricky (probably impossible) to find the proper balance. Being physically and socially active is necessary to achieve my optimal functioning (and mental health), but overdoing even a little can contribute to crashes that negate hard earned improvements. I can try to predict how much activity I will tolerate each day, but my predictions are a bit like the weather forecast in accuracy 

What I've learned (and it took me a long time to learn this) is that it's actually counterproductive to try too hard to optimize balance and self-pacing. Sometimes I will overdo, and there won't necessarily be any warning signs. If I'm hard on myself for overdoing, I'm wasting the energy and strength that I do have. 

Meditation has really helped me as well.


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## Larch (Oct 14, 2015)

Vinniebob said:


> sad part is when i have a flu, cold, etc it actually feels good
> at least the suffering is different then what i experience on a daily basis


Yes! The best part about colds and flus is that they get better, eventually ..... for most people, at least.


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## Metalize (Dec 18, 2014)

Piss.


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## bender477 (Aug 23, 2010)

Larch said:


> but overdoing even a little can contribute to crashes that negate hard earned improvements. I can try to predict how much activity I will tolerate each day, but my predictions are a bit like the weather forecast in accuracy


do you have ME, sounds like it.



I don't have much to add to others' thoughtful responses, I just wanted to express my anger that congress consistently continues to cut disability payments despite these being inadequate to begin with. it's back to the whole "no one knows what we go thru" line, even docs don't, they don't understand this concept of "can't" for basic, every day tasks such as cooking or bathing or eating. or how much harder it is to perform these same tasks when you are also on a budget. disabled people need *more* financial support than the average person, which means more than what people are making working at walmart, etc. starving sick people makes no sense from either an ethical nor economic standpoint: how can we ever hope to rejoin the workforce if we aren't allowed to work at stabilizing our health?

that's my political rant of the day.


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## bender477 (Aug 23, 2010)

I'm also fascinated by the number of similar stories I read here and yet how isolated all of you still seem to feel.
why do we continue to feel so sorry for ourselves when this kind of suffering is simply part of the human condition.
the disdain from friends and family members makes no sense in this context.

threadjacking a little: I'm also curious if any of you have had experiences of abuse while ill and been forced to explain to law enforcement that you could not "just leave" due to lack of funds or difficulty caring for yourself. I'm in the process of submitting a complaint to my old jurisdiction, and part of that is explaining limitations imposed by the illness like, "I cannot physically walk away," or "I would not choose to assault a 200 lb man because not only is that stupid but I am very sick and nearly bedridden and furthermore suffer from severe post-exertional malaise which makes any sort of physical activity extremely prohibitive". I have actually had to say these things. <-- if you want any further proof as to why the #blacklivesmatter movement has all the moral authority and law enforcement none.


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## s2theizay (Nov 12, 2014)

@bender477 It sounds like you're really being put through the wringer and I'm sorry for that. It's crazy that so many seem to expect people to get better under their own power when power is exactly what is lacking. It doesn't help that everywhere you look there are miracle cures, surgeries, pills and books. If you just read this, swallow that and believe in the power that is your ability to will yourself well, you'll be in perfect health in no time!

On the other hand, you have people that truly want to help, but are limited in what they can do. I don't typically ask for help because I don't know what to ask for. If I'm having a bad asthma episode, what should I ask someone to do for me? I can make my own tea and set up my own nebulizer. I'm pretty good at talking even when I'm struggling to breathe so I could call 911 and explain my own situation if I had to. Chronic illness is just that - chronic illness. It isn't going away. It can improve, it can destabilize, it can level off and then flare up. All you can do is read up, make the best decisions you can and keep going.

I do feel isolated, but not really because others make me feel that way. I'm used to taking care of myself and I don't think I could reach out for help from people even if I wanted to.


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## Larch (Oct 14, 2015)

bender477 said:


> I don't have much to add to others' thoughtful responses, I just wanted to express my anger that congress consistently continues to cut disability payments despite these being inadequate to begin with. it's back to the whole "no one knows what we go thru" line, even docs don't, they don't understand this concept of "can't" for basic, every day tasks such as cooking or bathing or eating. or how much harder it is to perform these same tasks when you are also on a budget. disabled people need *more* financial support than the average person, which means more than what people are making working at walmart, etc. starving sick people makes no sense from either an ethical nor economic standpoint: how can we ever hope to rejoin the workforce if we aren't allowed to work at stabilizing our health?


It is unjust, and I don't think doctors or lawmakers *can* understand without walking in our shoes. I wouldn't wish ME or a similar chronic illness on my worst enemy. I am really sorry you have to go through this, too.


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