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.
Wolfdreams.... 
Ash ;If people who have never had a serious illness would take the time to look stop and listen to the friend or realitive who has a chronic illness.
without judging the sick person.To really try to relate to the person’s illness to understand ,to look at the inside of the sickness to really really get in side the sick person’s being to see the pain the misery that is REAL very PAINFULLY REAL.Talk to the sick person Help where ever one can to overcome the loneleness of the never ending effects of pain.Never being able to visit relate to or even talk to people who do not understand how lonley one can get with putting up with the never ending discomfort of a chronic illness that does not allow for a person to function properly in the relationship of friends and family.Sometime our only comfrot is our pets when they seem to be aware of our pain phisicially and emotions .I will continue to pray for your health,comfort and HAPPINESS.On a lighter not i am going to pick up a new puppy tomorrow .a 8 wk.old either yellow or white labador .I have a huge male and for me he has the perfect attrbutes of a good house and outside dog companion.i dont want to let his blood lines to just dissapear. So i will be on the road for a few hrs one way to pick up my new little girl.May GOD BLESS you and comfort you .
BEN PETRONE
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Thank you so much, Ben!
The problem many of us have is that we have “invisible illnesses” – we often look healthy to people, so assumptions are made that we’re overexagerating, or just depressed, or even just that we’re lazy. Pretty much everyone I know has family members who just don’t get it, and they don’t take the time to try. Or, they can’t let themselves admit that we really are very sick.
I wish that more people were as understanding & supportive as you are. Thank you for being my friend. 🙂
Have a good time with your new little girlfriend! There’s nothing quite like having a good dog at your side. Or, an occasionally rotten dog who makes you laugh a lot & is learning how to be a good dog! My male shepherd, Shunka, who passed away about 2 1/2 years ago may have even saved my life when I had a cardiac related seizure – he got my daughter, and stayed with me, biting me, for an hour and a half. He was a great friend and companion. Kodi is learning to be.
*hugs*
Ash
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Ash, you always seem to hit the nail right on the head with exactly how I feel. You put into words so much of what I can hardly say anymore because it’s sometimes even too hard to admit to myself I guess. The person who wrote the above, that you’ve shared with us, wrote with the same heartfelt honesty of what it is truly like “living” with a severe chronic illness! The word “living” should be “existing” I guess, because as we all know, THIS is nothing like LIVING.
I agree that having so little support other than from those who have these illnesses too, adds more of a burden to our existence than necessary. All we want is to have a life worth living & to be “understood”. We’re seen as anything but ill by way too many who know us, who finally shun us because they just don’t understand. I have come to the conclusion, that unless you walk in our shoes, you just can’t.. That sometimes makes me very angry & I’m sure it is from pure jealousy of watching others living their lives the very best they can, & to their fullest. We’ve all been cheated. We have one go around in this life, & THIS is it.
Like so many others, I have never known a normal life being ill since childhood. I have to remind myself daily that even just a little bit of life is better than having an illness like cancer. I can’t even find the word I am looking for that is the opposite of chronic, my fog is so bad as I write this. I have known that other side from losing a loved one to an illness that robbed life altogether.
I have a saying: “I would love to give this life to someone dying, because, because it isn’t good enough for me”. To someone who doesn;t understand my daily struggles, (or ours), it sounds like I am very unappreciative of what I have left. In my heart I know that it means the world to me to not have something worse, but in all honesty, there are too many times when I am so angry & weakened with this suffering daily, that I have nothing left in me to fight for anymore. I know, anger is a wasted emotion.
I always felt SO lonely before the internet & meeting so many others with our conditions. It saddens me to know so many more are suffering, as I am. That being said, I have to believe that in the near future with all the research going on, there will be a day when we can collectively all have that life worth living, & we need to hold on for it. Now is when the research is finally admitting we have such a condition, even tho. I’ve suffered for 55 yrs. with it. Will I ever be normal or healthy? I don’t know, but if I can even get back what I’ve lost 20 yrs. ago wtih my decline, THAT would be worth living for!!
Big hugs to you Ash! May you always have the ability to write so beautifully to express yourself. I know there are those who can’t verbalize at all or use their hands, to share something so beautiful with the world, as we are still able to do, with their own heartaches of other illnesses. Hold on to your inner strength friend, & just always know you are never alone.
What a beautiful story you shared about your dog Shunka. Dogs are nothing short of amazing! If I ever get the energy to feel I can take care of one again, that is on my wish list I think. If I can’t do it right & all the way, I won’t do it at all.I remember how difficult it was to take care of my precious cat in her last wks. I could hardly drive her to the vet & that was 12 yrs. ago. I have declined since those days.
Ben, enjoy your new dog! It puts a smile on my face to know you aren’t letting health issues stop you from wanting another one. I commend you both for having pets now & I know it IS healthier having one. A dr. even asked if I had a cat for b/p issues!
Take good care Ash, & thank you for this beautiful blog. Love to you. Dale
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Thank you, Ash. Sometimes things need to be said which are not so pleasant. I feel I am blessed to have a precious few friends in my life who understand and who let me speak these words which others will not. It helps. Without their empathetic understanding, I would feel terribly isolated. I thank you for bringing up this subject so it can be shared.
Patricia
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Patricia, well said! I went through that last nt. with someone who is a very great friend. I needed someone to talk to & not once has this person every acknowledged my illness. When people say nothing at all, it is sometimes more painful than words can be. They chose to ignore my email, & for all they knew, I could have been suicidal. You are so right, there are people you can talk to, & there are others who have heard it enough times to become disgusted with you & wish you would go away, & then somewhere, there are those who will just let you vent when you need to. I hate when I even get that way. Yes, the isolation is horrible. I just have to say that after working in the med. field for 18 yrs., I always had empathy & sympathy for people, but after dealing with my own health issues, it has certainly given me more.
Ironically, the one who chose to ignore me last nt. is the first to complain about their little aches & pains & expects me to listen to them when they write to me. I used to be sympathetic, but after last nt. I never will be every again. Enough said. 🙂
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Meanwhile, back on Facebook, two very dear friends shared their very wise comments on the issue:
E.: Oh, Ash. so well said. this winter has been hard, and all of that has been on my mind. thank you very much. it’s such a huge comfort to just read your words. i never get it when people take the position that we’re only supposed to be chipper. it’s so dishonest. i’m with you. thank you again so much for being with all of us.
D.: Oh I so agree, with you, with that, with Ella; it is such a rant of mine-from illness to having your house flooded or whatever-the mentality of chastising someone for feeling bad and not “being grateful” is cruel and self-righteous; it is right up there with telling an overweight teenager that they should go on a diet while they are having a piece of birthday cake. I posted a bad day awhile ago, and tried to put a ‘funny’ spin on it-one reply that I got was a commencement speech, basically telling me that I should be ashamed for feeling bad, because there is someone out there feeling worse than I am. What I hadn’t posted that day was some really really bad news. So it was kind of sadly funny; this person was in essence doing what I was being chastised for doing.
to when I was working in the ICU-I would never ever consider going to a “boarding patient” “Hey, you need to cheer up! You’ve got some nerve being sad b/c you had a heart attack! So what? the person in the room next to you just died! Sheesh! You big baby, buck up, for crying out loud!” There is a big difference between being a whiney malingerer and simply being honest about how crap a situation is-I think that people mis-understand honesty sometimes.
E.: I also think it comes, to some extent, from fear that if you acknowledge how things are for even one moment (when you’re not in the sunny-muffin happy place) then you’ll get trapped there, immobile, or just spiral downward.
then there’s ignorance of what it’s like. i remember when i realized (from experience) what it was like to have one’s back “go out” – and how incredibly affecting that was. Immediate reality check to the part of me that had basically thought “ya big baby” to someone else in that situation.
Empathy comes from experience, in my observation. i still don’t understand why people laugh at the crotch shots in “funniest home videos” – or the ones in which it looks like the person had to be rushed to the hospital afterward.
Dawn, your insight about people expecting everyone, no matter what the tragedy, to just suck it up and feel nothing is very good. It’s pathological – in a society that turns everything into a disease, anyway. – people mistake sadness for “depression” – and the normal process of grieving loss (of whatever, one’s home, livelihood, health, …) is truncated. Incomplete grief can be very toxic – and our culture shows very little support for healthy grieving. It’s a process, not a single-shot deal.
peace to all those who are suffering, somewhere. i feel like i need to practice tonglen for the rest of my life.
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Wow! What a wonderful true-spoken post Ash.
I’m tired as I write, (ha! ‘Tired’ –Exhausted might do for now), so I may not be able to respond as thoroughly as I’d like to, addressing the big picture of being ill; what all it takes to live, how sometimes that is the hardest thing to do, the pain, the unrelenting chronicity, etc., but I wanted to reply as best I can.
Regarding FB, I am quite sure I would have signed off already if you were not my friend on there. Hate to say it, but it’s so, lol. Now, I am happy to say I have a few other FB friends who understand, indeed I do, and they are very nice, but I haven’t been able to develop closer relationships with them, mostly due to brain fog and fatigue, which in itself is sad. Already having ‘known’ you, and the sisterly feelings I have for you, then the times I have thought of signing off, I remember you!
I’ve noticed when I post about something fun or happy, people I haven’t heard from in forever will like or comment, but when I make reference to difficult parts of life, much less if I were to express that, at times my entire experience of life is a hard one, there are only a few people who respond, and for those I am grateful to know. I find it difficult, really, to ‘hang out’ where the majority either turn a blind eye, judge and/or think they are above suffering.
I see people posting about the happy events, which is cool right, but some folks simply do not want to associate with people who think or dare to write/speak about suffering. Even the poor dogs who need adopting seem to fall into the same category of ‘leave that alone because it represents (perceived) negative thinking’.
I’ve had people tell me that I shouldn’t hang out with sick people. This was their explanation for why I was sick. I’d go insane if I didn’t know others who know the suffering of chronic illness. And like you say, everyone feels bad and suffers sometime. I agree with one of replies above who said that if the healthy folks would spend time listening to the sick people, well, that would be good. They could learn a lot about life, and living.
Thank you for carrying on Ash! You are a strong woman and I feel very blessed to have met you and call you my friend.
Love,
Michelle.
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I liked what one friend said, that its so dishonest to pretend all is well, and only post on fb about the good things. You know by now that for me, its radical honesty, all the time. I don’t think we should feel the pressure we do to always be “happy” or “positive,” especially when things are going south.
I will have to have some kind of fb meet’n’greet, to link you and some of my other friends who don’t know many who are ill… I have made some very close friendships on there, and its a positive experience, knowing there are so very many others who “get it.” I think of my just over 100 fb friends, more than half are chronically ill. I’m trying to figure out the facebook lists feature, so I can send some status updates to only my chronic friends, instead of to everyone.
I get a lot of very useful info from facebook, too, its how I stay on top of the latest developments & research.
Know that I’m always here for you, and I know you have an even tougher road to follow than most of us do, with your son’s illness, etc. Anytime you need someone to listen, I’m here. And radical honesty is welcome, where others might shut you down.
Much love & gentle hugs,
Ash
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Ash, I cannot *at all* deal with the inspirational shit, especially the kind that goes by on facebook – cliched images (usually beautiful images of nature) with sappy inspirational quotes on them. I don’t fault anyone who finds them helpful, but they’re like a “Hang in There!” poster to me – worse than useless. They make me feel a bit insulted and pandered to, because inspirational quotes don’t improve my functioning, and they certainly don’t even improve my day!
Of course there’s a massive amount of loss in this illness, and you have to have a way to process it. For me, I think one part of what allows me to deal with this is just plain old black humor about how much it sucks. That’s a great outlet, and my friends are good enough not to see that as complaining, but as something I can do within my very limited energy that’s cathartic for me. And it *does* make me feel better – maybe it doesn’t improve my energy, but unburdening myself of some of that discouragement with levity really does help me feel more in control of my illness. It can take almost everything from me, but I can still hit back!
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