I published a picture of myself on this post because it is relevant to what I am about to post. At work the other day, a customer overheard me talking to another employee when I was explaining why I only work a few hours a week. I was saying that I have several chronic illnesses and my health won’t allow me to work more than a few hours. I went on to say that I had chronic fatigue syndrome, fibromyalgia and interstitial cystitis. The customer, who had just walked into my line said, “Oh my! You poor dear! I’m sorry to hear that you have to go through so much. But I have to say that you look remarkably well for someone who has so many health problems.”
I was flattered by her compliment and appreciated the fact that she thought I looked good, and I don’t like looking sick, which I have been known to do many times over the years. I have also looked like hell more times than I care to count also and people who know me – really know me – like my family and those who see me all of the time – can tell when I’m having a good day or a bad day. I’m always told that my eyes show how bad I feel.
I guess the point I am trying to get at is the same point I’ve been trying to make for years – everyone has this preconceived notion of what “sick” looks like and with invisible illnesses like CFS and FM, we look too healthy. People can’t grasp how truly sick we are because we look too well, so to many we aren’t “really sick”. But if you stop and think about it, haven’t you seen:
- cancer patients who don’t look sick?
- MS patients who don’t look sick?
- AIDS patients who don’t look sick?
A lot of times when we think of cancer and AIDS, we think of people who are terminal, but there are many people with cancer who and AIDS who live. These are real diseases, these people don’t look sick, but no one questions whether they are sick or not. As soon as they hear the disease names, we automatically think either sick or dying. With CFS and Fibromyalgia, we are considered just as sick as someone with cancer and AIDS, but because we may look healthy, society says we’re not really sick. It’s a cruel double standard we’ve lived with for years. No, we’re not dying but we will die with these illnesses.
It was a relief to hear someone say what the customer said to me, but I was extremely shocked by her comment because I’m not used to hearing that. I am used to having to go into detail because people just don’t grasp that I am very ill. How many other illnesses do people have to explain why they:
- can’t work at all or work very few hours?
- can’t work more than 2 – 3 days in a row?
- can’t handle stress?
- can’t exercise at aerobic levels or can’t exercise at all?
- can’t get out of bed one day but the next day might be able to work?
- can’t do more than take a shower or wash their hair before collapsing?
- will collapse after light exertion?
- live with constant, excruciating pain?
I could go on and on with the list, but you get where I’m going. It is only with invisible illnesses like CFS, Fibromyalgia and related diseases that we have to go through all of this crap with society, doctors, employers, friends, families, and everyone over and over again. It’s a neverending battle that is, pardon the pun, exhausting. But as exhausting as it is, we have to continue fighting for ourselves. The only way to make invisible illnesses visible is by sharing, educating, research, and hopefully soon, an answer to what is causing all of this. I believe we are getting close with the XMRV. The next year or two ought to straighten out that controversy.
We don’t have anything to be ashamed about and there is no shame in telling someone you have ME/CFS or Fibromyalgia. They are REAL illnesses that affect millions of REAL people everyday. I know that people are sometimes afraid to mention what is wrong with them and I used to be like that because I would worry about what people would think. But I don’t feel like that anymore. Knowledge is power and the only way people are going to learn about us is from our stories.
ME/CFS and Fibromyalgia may be considered invisible illnesses when looking at us from the outside. But those of us suffering know how very visible and present they are in our lives every minute of every day.