Invisible Illness Awareness Week

Okay, so I missed the first day of Invisible Illness Week, but I have an excuse...my invisible illness had me flat out! So, better late than never, right? Invisible Illness Awareness Week is an important event to increase the public's awareness of how prevalent illness is in our society. Everything from rheumatoid arthritis to MS to Crohn's disease to dysautonomia is encompassed in the invisible illness label. Many people struggle day to day with their illnesses, and their caregivers often struggle just as much. We need to offer support for the chronically ill and their caregivers and families because, unfortunately, most of us will have our lives touched by an invisible illness at some point in our lives.

Last year I did a 3 part series on Invisible Illness including You Look Good, You Must Be Better Right?, What NOT To Say, and The Push-Crash Cycle. I thought this would be a good time to revisit those posts as it is important to remember that just because you can't see it, doesn't mean it isn't a devastating illness. I hope that you all find these helpful!

National Invisible Chronic Illness Awareness Week

Okay, so all of you know that I recently did a "mini-series" of sorts on Invisible Illness. Interestingly enough, this week is National Invisible Chronic Illness Awareness Week (Sept 8-14) at www.invisibleillness.com. They are sponsoring 20 free online seminars on Chronic Illness, featuring guest bloggers daily, and have articles to read, among other things. The theme is "Living with chronic illness is a roller coaster. Help a friend hold on!"

As you'll see to the right, there is a new widget that I have added to support this week. As it says, Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. Now, of course, not all illnesses are disabling, but all people need love and support when going through a tough time. Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness say, "Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones."

If you know someone who suffers from or has a loved one who suffers from a chronic illness, be sure to check out the website and pass on the word.

· 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! :)

Invisible Illness Part 2: What NOT To Say

A woman that I met through the Dysautonomia Information Network (dinet) has a great explanation of things that can be difficult for people with severe chronic illnesses to hear. I received this list from Melissa Mambort, aka Sunfish, who also has autonomic dysfunction (severe progressive autonomic neuropathy). She has a great website on which she shares many of her struggles and ideas at http://www.freewebs.com/sunfishoutofwater/adayinthelife.htm.

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A few things NOT to say/ask (pretty please?)

I realize that 99.9% of the time the things I'm going to list are NOT said with any malintent. People may simply be trying to make conversation in a difficult situation.

I am posting this to let people in to a bit of my world. To raise a bit of awareness and educate people about how certain things that may seem benign can actually sound on the receiving end.

Here goes:

1. "Are you feeling better?" When asked generally, this question is particularly tough for me. Because my reality is that I don't even know what it means to feel "better." If asked in the context of something specific, i.e. a recent hospital stay, a particularly bad day, a certain situation, etc. that's entirely different and fairly easily answered, but often it's asked in a general sense because people want to hear me say "yes." I would LOVE to say "yes" and have that be the truth. But that's not the truth and after years of decline and it's not likely to be anytime soon, if at all. If I were better I wouldn't have had to stop working, stop even part-time school, move in with my parents, etc. You get the idea. But trust me...if "better" enters into the picture, I will be shouting it from the rooftops.

2. "Stay positive/ hopeful, things will get better..." Most people who know me well tend to say I'm a pretty positive and hopeful person. I'm also stubborn & determined & have thrown in some denial over the years to keep going at times when my body has vehemently protested. I will never give up hope of improvement(s) - however small or large - whether via medical treatment or a miracle. I wholeheartedly believe that anything is possible. But my current reality is that there aren't any promising treatments on the horizon for my overall health. And to be truthful thinking on a daily basis that things will get better when it is very possible that they won't is more difficult than trying to move forward as best as possible within the actual limitations of my body.

3. "I know exactly how you feel (regarding fatigue, nausea, moving home, etc.)" Whether in the context of chronic illness or anything else this is dangerous territory. There are many realms wherein I would have no place saying this to another. And, however well intentioned, it's a hard thing to hear when one knows full well that it's not true. The few people who really can say this to me in my life because they have in fact been where I am in some way are precious, but the reality is - thankfully - that most people haven't been. Because being fatigued, even if from illness that is more short-term, isn't the same as being fatigued all the time. Having a stomach bug that limits food for a few days isn't the same as not being able to eat at all for months on end. And moving in with parents for various other reasons isn't the same as moving in because of not physically being able to live alone any longer. So while empathy can be a great thing, the good intention can end up hurting more than helping when the comparison isn't really comparable.

4. "It must be great to not have any schedule/ commitments" It IS great when normally one's schedule is packed and it's for a weekend or even a few weeks. But it is NOT great when it's because it is physically impossible to keep a schedule or honor commitments. I would love to be able to know that I can do anything at all in a given day much less schedule anything and feel confident that I would be able to be there.

5. "I wish I could sleep/ rest that much" Much along the same lines as the above sentiment, it's a situation of something being a choice or a luxury rather than it being a mandate. Excessive rest and/or sleep isn't enjoyable when the body refuses to do anything else.

6. "Are you glad to be home?"/ "It must be great to be back home" This issue is a double-edged sword. As I wrote a bit about in the update about the move (10/30/06), it's in truth very difficult. I am very thankful to have a place to come home to. It is a safer place to be in the midst of ever-evolving medical sagas. And since we've known the move had to happen it's good to have it behind us rather than looming ahead. But that doesn't make it great or something that I can get excited about. I'm almost 27 and had lived on my own for over nine years. I never could have imagined moving back in with my parents. Coming home to visit is one thing but moving in indefinitely because I physically can no longer live alone is entirely different and more than a little difficult.

7. "You don't look sick" To be honest I'm thrilled that I don't look as bad as I often feel. There are times when I don't look well at all but most of the time - if I'm sitting or lying down & you can't see my IV lines - I don't look sick. But hearing "you don't look sick" can feel like doubt or disbelief when the reality is that no matter how good I look, I am.

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The comments from Melissa's list that have been most difficult for me are #3, 4, and 5. I had a few people saying that it must be nice to have a “vacation” and sleep and rest. One said that now I could be a "Lady of Leisure". Another friend had someone say it must be nice to stay home and “eat bonbons all day”. Wow. Is it nice to be able to sleep when you have the flu? No. Is it nice to not be able to stand or walk or drive? NO. Is it nice to be forced to stay home when the only thing you want to do is work? NO. So of course it isn’t nice, it’s terrible. Thankfully, most people weren’t that insensitive and realized how difficult it must be to be that sick.

So, does this mean that we don’t ever want to talk about our illness or how we’re feeling? Not at all. It is a huge portion of our lives that cannot be ignored. It is fine to ask how we have been feeling or how our doctor’s appointments are going or what we’re up to during the day. In fact, we appreciate that. What we don’t like is people acting like if we have a day where we are not close to comatose then we are all better, or thinking that they understand how we feel. No one who hasn’t had their life completely taken away by illness can understand what we are going through. BUT, don’t be discouraged or scared about what you say every time you are near a sick person. If you truly care about and love that person, they will understand what you are trying to say. Just try to apply a version of the golden rule: If I were in that person’s shoes, what would I want to (or not to) hear?

Invisible Illness Part 1: You look good…you must be better, right?

Uh…no. This is a common problem with many people facing chronic illnesses: the so-called “invisible illnesses” that ravage our insides, but may cause only minimal visible damage outside. I know in my case, when I look the healthiest (nice rosy cheeks, good color), it actually means that I am not doing so well and my temperature regulation is on the fritz and I better sit or lay down fast before I fall over.

Invisible illnesses are many these days and can include anything from severe arthritis to fibromyalgia and chronic fatigue to lupus. In some ways, these illnesses are all the worse for the fact that people can’t tell that you are sick by looking at you and therefore may make judgments about how much you should be doing, even if you cannot.

One of the most difficult things that chronically ill people have to deal with is actually the way they are treated by others rather than their daily symptoms. Although ultimately it is the illness that is causing the destruction in their lives, it can be devastating to hear callous or insensitive remarks from people who are often well-meaning but speak before they think. Sometimes even things that sound completely innocuous can be painful for us to hear, even though they might not seem like it.

Some examples of helpful and hurtful remarks are given by the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America at cfids.org:

CFIDS Family & Friends:

Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust. Examples:

What do you expect me to do about it?

You'll just have to live with it.

If you just _________, you'll get better.

Pull yourself up by your bootstraps.

You can beat this thing if you really want to.

I have a lot of the same symptoms as you do.

Healthy people do experience some CFIDS symptoms from time to time, although not as frequently or severely as PWCs [people with chronic illness]. Statements such as, "I get tired, too," and "You're not the only one who's forgetful" may cause persons with CFIDS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively.

Examples of helpful responses are:

I'm sorry you're feeling so badly.

I wish I could make it better for you.

I know this is difficult for you.

You're handling this illness so well, but I know it really gets you down sometimes.

What can I do to help?

Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at "fixing." Often he or she just wants you to listen.

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The next installment of the invisible illness series will talk about what not to say to a person with chronic illness.