Saturday, August 23, 2008

· Invisible Illness Part 3: The Push-Crash Cycle

From CFIDS Suggestions for Friends (cfids.org):

Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

* Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later.

You can pretty much guarantee that anytime you see a friend that has some type of severe or debilitating chronic illness, they look better than they feel. For some reason, unknown even to ourselves, we always brighten up & act healthy as can be when were around friends, family, even doctors. So if a person w/an “invisible illness” LOOKS sick, you know they’re in really bad shape. Most of us wish that there were a way to convey how bad or ill we feel, but in many cases we’re just so happy & amped up to be around other people that we seem almost healthy. The real problem w/ this cycle is that it often gives people a false idea of how severe our sickness is: “Well, she was sitting up & talking to me, so she must be doing really well” or “she came out to dinner with us, so she must be all better”, or “I saw him at the store the other day, so I don’t see why he can’t work” or “ if she can do___, then why can’t she___ (drive, work, babysit, etc)”. I am TERRIBLE about acting nice & healthy at the doc or around friends but then being unable to get out of bed for days as a result of my excursion. In many cases, we actually have to concentrate so hard to keep from seeming sick that we push ourselves farther into illness.

It’s a strange paradox: we want people to know we’re sick, but we often don’t want the public stigma that goes along with it so we go out of our way to act as healthy as possible. In a way, people with chronic illness are “masters of disguise”: disguising their illness, disguising their fatigue, disguising their pain. I know countless examples of people who should be using a cane or a wheelchair in public places (including myself), but refuse to do so out of embarrassment & to avoid the stares of strangers wondering “What’s wrong with her?”. Many of us find ourselves avoiding going to stores or on public outings b/c we don’t want to be seen in a wheelchair. Or we feel self conscious using our handicapped sticker b/c we look young and healthy but can walk less distance than an 80 year old. It’s a terrible shame and ridiculous in a lot of ways, and it’s something we have to fight against every day. As a person who was always in control of myself & my own destiny before my illness, it’s agonizing to have to be pushed around the grocery store in a wheelchair. I know I often push myself WAY beyond my limits (and then pay for it later) just to avoid feeling weak & dependent on someone else. It’s an endless struggle.

What is also important, however, is to hold on to a certain amount of your own stubbornness and independence. You must spend most of your time working within your limits, but cannot allow yourself to atrophy & give in to sickness & despair. lf you do not know how far you can go (and have a drive to constantly work to increase that amount) then you will have a much more difficult time improving & dealing w/ your health problems over time. For example, I am now doing Physical Therapy once a week to build up the muscles around my joints because I keep dislocating them. It is thoroughly unpleasant, and makes me feel worse in general, but it is a necessary evil and may eventually increase the amount of activity that I can do.

One more interesting description of how difficult it can be to manage the small amount of energy you have throughout the day is called The Spoon Theory by Christine Miserandino. The theory explains how a person with a serious illness must have extremely good "energy management" skills that allow them to make it through each day. I recommend anyone that knows someone who has a serious illness check it out to get a bird's eye view of how difficult it can be to do even the most basic of tasks when disabled.

I hope that everyone has found my little Invisible Illness series interesting and useful. I have lots of ideas for future posts, so you'll just have to wait and see what comes next! :)

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To make you smile...

Tubby

Tubby
Sweet boy

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Chloe Bear
Chloe as a baby!