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! :)

6 comments:

Ann Corcoran said...

Hi Lauren,
What you're saying is right on target. CFIDS is impossible for most people to "get". For years, my brother was homeless because of CFIDS. He was reviled for not showing up at important events in his family's life, because (of course) when he was well enough to show up, he looked okay. Many of us thought he was just a loafer, or didn't care, or was an incredible liar. It's taken a long, long time for him to have gained respect. I tell my brother's story in my book, "A Chronic Fatigue Syndrome Caregiver's Guide to Hope." Let me know if you'd like to read some chapters, and I'll email them to you.

Lauren Butare-Smith, DVM said...

Thanks for your comment, Ann. I'd love to read some chapters of your book if you don't mind sending them! My email is lmbutare@hotmail.com. I look forward to reading it.

Lisa said...

Thank you so much for your blog and posts on chronic illness.

I apologize for leaving this as a post. I could not find an email for you.

I am the founder of National Invisible Chronic Illness Awareness Week, which is September 8-14, 2008. We have 20 free seminars we will be featuring on Blog Talk Radio.

The theme this year is "Hope Can Grow From The Soil of Illness."

We have tons of information on our web site www.invisibleillness.com, including facts/statistics, articles, and some great products from cute t-shirts to white silicone bracelets that say, "Invisible Illnes - Visible Hope."

We also have a blog set up where we provide daily updates about EVERYTHING Invisible Illness Week-- how to help spread the word, news coverage we've received, what people are doing, and daily guest bloggers.

We hope you will consider joining our efforts. A couple of easy ways is to install the "I'm blogging for Invisible Illness Week" badge on your blog and writing a post or two about invisible illness week issues.

You can blog about II week or invisible illness anytime, but we hope to have hundreds of people blogging about Invisible Illness on Sept 8th to kick the week off!

To receive more information, visit www.invisibleillnessblog.com.

Again, thank you so much for bringing awareness to living with chronic illness through your web site.

Lisa Copen
Founder
National Invisible Chronic Illness Awareness Week
http://www.invisibleillness.com

M & J said...

Thanks so much for this post. I have a rare lung disease and this post sums up my life...

Tanya said...

I know the posts above are years old but do you by any chance still have the chapters Ann emailed you from her book? I'd love to read them. I think I have POTS (waiting for a Tilt Table Test for diagnosis) and am reading as much as I can find on invisible illness. Hope everyone here is doing well!

TS Reimer said...

Thank you soo much for doing this blog! I needed to hear the things you were saying in your different links. I have been trying to get a diagnosis for a year now and nobody knows whats wrong. After taking my heart rate many times and the symptoms matching up I'm pretty positive it's POTS. You have summed up what I am feeling and going through. It's nice to know I'm not alone. You are a wonderful writer! Thank you and God bless you in your fight!

Loading...

To make you smile...

Tubby

Tubby
Sweet boy

Chloe Bear

Chloe Bear
Chloe as a baby!