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.

Invisible Illness

After a long hiatus (I've been a bit under the weather lately), I will soon be posting a 2 part "series" on Invisible Illness. In it, I'll be talking about what to say and not to say to chronically ill people, why we often look and act better around others and then crash when at home, and a little about what "invisible illness" entails.

Believe it or not, I’ve always been a really private person, so it is hard to share my personal struggles with the whole world through this blog. As I have mentioned before, I have decided to do this because I want others to be helped by my struggle with illness. By reading the posts, you might get the idea that I’m not all that sick b/c I am able to write the entries each week. Well…what you don’t get to see is the fact that it takes me at least a week to put together even the small posts b/c I can only work on the computer for a short time each day, and even that is while I am laying down. I am not writing this to gain pity or even sympathy, I just want to make sure that everyone gets a realistic picture of what having POTS and chronic fatigue syndrome is like, and not an image of a healthy person enjoyably typing away for their blog. This is a lot of work for me, and I have to give up many other activities (sketching, painting for short periods, etc) so that I can make entries and share information. But, it is worth it if I can help even one other person feel a little bit better during their fight with chronic illness or just make living a little bit easier for them.

So, along these lines, I wanted to write a few posts about the difficulties of dealing with an "invisible illness" and how it affects us, our caregivers, family and friends. I hope that it will be helpful to get a peek into the mind of a person with a chronic illness.