Earlier this week, a Facebook page I “Like” put up a pic that seemed to have been written by a fellow ME/CFS/FMS patient. I’d show it to you, but it appears to have been removed, likely because it was a little too honest. EDIT: thanks to Barbara, I have it!
The response to this was interesting. I don’t often read the comments on pics, because there are roughly 400 pics in my FB feed a day. But I read these, in part because this image & these words were so different from what this page, which belongs to a CFS/FMS support group, posts.
A few people commented that yes, that was it, exactly! And then came the criticism, along the lines of “I come here for inspiring & uplifting information, not something like this!”
And it was that criticism that made me kind of angry at the time, because we all feel this way, at least some of the time. You would have to be made of stone to not feel sad, depressed, angry, frustrated, and lonely at least some of the time.
But that’s just not how you’re supposed to react to an illness that a) robs you of your ability to work, b) to attend family gatherings, c) to have a social life, and d) to enjoy even simple things you used to take for granted, like going to the movies, or watching tv. And also, of course, an illness that leaves you with an overwhelming exhaustion, chronic pain, an underperforming GI system, a brain that has a hard time thinking, and do I really have to go on? ‘Cause it’s a long list & I’m sick & tired & in pain.
No, you are supposed to only look at pictures of kittens & fluffy bunnies & flowers & read inspirational quotes & sayings in your spare time, when you’re not researching into something, anything, that might make you feel better.
You’re supposed to keep your chin up, never lose hope, never give in, because you’re in a terrible fight, and allowing yourself to grieve for everything you’ve lost, well, that just won’t do. Not in our society.
Which makes it even harder to endure this pseudo-life.
A month ago, I put up a post, We Know The Enemy or ME/CFS/FMS Explained Again, that through the miracle of the internet & our social networks, was read by over 800 people, instead of the usual 50. I’ve been working on a very long post in response to that, but seems this is going up first or instead of.
Because, when I finally got over the shock that a blog post I had written to my brother was going “viral,” I thought to put my contact info to the right, and some of the things people wrote to me privately were so very heartbreaking. Things like being pretty much disbelieved by everyone in their lives, feeling like they were dying ever so slowly, and yet no one even believed they were really sick, including their doctors. They were so relieved to connect with someone else who was where they are, and who “got it.”
Yes, I get it. And I also sometimes get very frustrated, sad, anxious, depressed, and angry.
And I’m not afraid to say it, or talk about it.
I’m even going to go out on a limb here, and say something else we almost all feel at some point, maybe not in the early years of illness, but once you reach a certain point: it’s hard sometimes to keep on living. To even want to keep on living. Sometimes, I feel like nothing but a burden, or I’m just so very tired, it seems like a lot of effort just to keep breathing. Sometimes, it just seems pointless, and sometimes I get tired of saying, “well, I’ll try again tomorrow.”
All of which is perfectly normal for a person as sick as I am, and as sick as you may be.
What’s not normal, in my mind, is that in our culture we aren’t supposed to ever admit our own true feelings about the wreckage of our lives; we’re supposed to keep fighting to the very last breath, and goddess-forbid you have a negative thought – better keep to those positive affirmations!
And yet. The suicide rate amongst our community is tremendously high. Many of us will admit privately to having “the agreement” with a close friend or family member – that when we get to a certain point, we’re going to go out on our own terms, and we’ll let them know so we can say goodbye.
Maybe, if we actually were allowed to talk about our feelings – the sadness, the anger, the desperation – and admit to having them, it would help.
Maybe, being guilt-tripped for even having negative feelings is only adding to the strain.
Maybe, we should all recognize that deep mourning for our previous lives & health being lost is normal.
With many of us alone because family & friends just can’t or don’t want to understand, being open & honest with each other becomes even more important. So is linking up those who aren’t connected into the patient community.
Linked together, we are stronger. When one of us is frayed to the bone, hopefully another member of our community will be there for them.
There are just some things that only another person with ME/CFS/FMS/Lyme can understand.
Like being sick & tired of being sick & tired.