Adrienne, author of the About.com Fibromyalgia & CFS Blog, wrote a post last week that really struck a nerve with me – Fibromyalgia, Chronic Fatigue Syndrome & Negative Attitudes Toward Each Other. Adrienne writes:
Those of us who have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) are all in this together, right? No one else really understands what we go through, and I truly believe that the best thing we can do is learn from each other.
That’s why it really bothers me when I see someone with FMS or ME/CFS take a defensive attitude toward other people with it. I see it most when someone who’s severely disabled starts to question whether someone not as badly disabled really has the condition. I’ve seen biting comments like, “I certainly can’t do all those things! Are you sure you have FMS?” or “If you’re not bedridden, I don’t think you really have ME/CFS.”
I have written about this subject over the years on this blog different times but it always bear repeating. The more popular this site gets, the more exposure I get, and the more emails I get and social networking site comments from others suffering from ME/CFS leaves me no choice but to write about it again. Sorry if this offends anyone, but no one with these illnesses should be comparing themselves and their symptoms to other sufferers.
People assume that if you are at a point in your life where you are functioning somewhat better than they are you have no idea what they are going through. As a ME/CFS and FM sufferer who has been bedridden several times over the years, I do not want to hear a sentence that starts with…”It could be worse” because I, as well as other sufferers who are semi-functioning know what worse is because we’ve been there and we will more than likely be there again.
Anytime someone starts a discussion with “It could be worse”, “At least you don’t have cancer/AIDS/etc.”, and continues to go on with how bad they have it, is clearly disregarding your feelings. I had to cut off communication from someone I was very close to because all this person ever did was play the “I’m sicker than you are” game and I just got tired of it and it was not healthy for me to be part of that and I did what I had to do to make it stop.
When someone has a chronic pain condition that is severe but they don’t suffer from extreme fatigue, naturally they are going to think that they would rather deal with fatigue than pain. But us ME/CFS patients know that we would take the pain any day over the excruciating fatigue because we know what it is to have that fatigue. My point is, regardless of whether you are in major pain or suffering from the devestating fatigue of ME/CFS, it’s all bad and we are all suffering together. It shouldn’t be a contest.
Adrienne also wrote in her article about how she has encountered people who have more severe symptoms are questioning and doubting others with lesser symptoms that they are even sick. We get this kind of crap from society why would we pull it on each other? Life is too short and we don’t have the energy to waste on this crap. Playing the “poor me” card gets old really quick and I am one who refuses to stand for it. Regardless of how sick we are, we have to learn how to cope with being sick. And yes, I can still say that regardless of how many times I have hit bottom with these illnesses.
Why can’t we just be there for each other, support each other, say “I’m sorry to hear you feel that bad today” without comparing and judging?