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?
More heads are better than one and learning is also sharing..
Nice post. I totally agree.
Hi, Sandy! Thanks for the shout-out.
I just wanted to say that, as someone with fibromyalgia and multiple sleep disorders, I don’t know how you ME/CFS folks do it! Yeah, pain is horrible – believe me – but I can function through all but really severe pain. Fatigue, though … it’s a whole different story. I’m fortunate in that my worst sleep disorder, narcolepsy, is only triggered by gluten, so as long as I watch my diet I don’t have to deal with the horrible, persistent fatigue. I have about 2 dozen diagnoses now, but I count myself lucky that I don’t have ME/CFS!
Hi Adrienne! I enjoy reading your blog. I really appreciated the post you wrote and everything you do on your site for chronic illness. I suffer from sleeping disorders also and I think if we could just get the sleep issue under control, everything else would be better. Take care and I will keep reading!
Sandy – You are soooooo correct on the sleeping issue. It’s getting worse and worse for me and I’m on medication, etc. I’m at my wits end and I feel like I’m losing my mind.
Sandy – p.s. – sent you an message through FB.
I’ve got both fibro and ME/CFS and I have to say the pain is easier to deal with than severe fatigue. Pain you can sometimes block out, sometimes take pain killers, take a bath…there are things you can do for pain. There is NOTHING you can do for fatigue except that – nothing. Rest. I can work through the pain unless it gets really bad, but when i have periods where my fatigue is more than usual, I’m lost to the world. Fatigue is a symptom of fibromyalgia, so I’m not making a distinction between the two illnesses here.
Suffering is suffering. We all have pain – emotional & physical. There is no way to measure the subjective quantity of suffering. It takes very little if anything to have compassion for other people suffering. Misery loves company, not judgement. Let’s comfort each other, commiserate, bitch together, work together, hug each other, but let’s not let our egos create divisions between us.
Thanks, Sandy.