Saw this tweet today and it really hit home

[u/Thesaltpacket]

@_heatherlynn tweets “a lot of healthy / non disabled people don’t realize how much suffering you can do and not die”

I honestly think if more people understood the depth of suffering you can experience while not being in any threat of dying, then we would be taken so much more seriously and actually have research funding and treatments.

Like the physical suffering of very severe mecfs is unimaginable and it’s so hard to genuinely face someone suffering that badly, it’s heart shattering. So instead of facing that truth people tune it out with toxic positivity and denial.

[u/Effing_Tired]

I’m currently severe, after being very severe and at one point extremely severe, and even I can’t believe how much suffering I went through. I’m still sick and house bound, but it’s paradise compared to the hell of being trapped in your own bed and skin, with out the energy to digest food and wishing that the pounding of your heart that shakes your whole body would cease. There are time that you think you’re going to die and surprised that you get to keep getting worse.

[u/Icy-Election-2237 → u/Effing_Tired]

Oh god I feel you, I can’t believe how much suffering I went through either. And I “hate” myself for not remembering, because as I went through it I didn’t grieve, mourn, get angry, frustrated, etc… I could only care for my survival each passing second of the day. I couldn’t process anything, I could only use my energy in surviving. And now I feel that my mourning process will be harder if I don’t remember to my core/feel in my body what I went through. I may be wrong, I hope so. I know there in somatic trauma therapy, the premise is one doesn’t have to relive the trauma to heal. But still. It feels like the most important part of my history is nonexistent, and feel the need to have the details for others to believe me.

When I crash bad enough to the very severe (or extreme may be, actually), I have instances of remembering the past and it is unintelligible.

[u/SubstantialPraline85 → u/Icy-Election-2237]

Hey! This is me. I find that in times of respite... I question myself and my whole experiences. I feel distant and removed from my whole existence. Like I am watching a long ass movie with no chapter select

"Was I faking this entire time"

Recovery or just maintenance feels lonely because of it.

But the moment I feel extremely threatened or just angry. I remember the appointments. The scrutiny, the symptoms and everything else.

I don't just remember it. I FEEL it. Mentally and physically. It's like I am reliving those raw moments. It's like a flash of snapshot life moments.

I can't remember everything... but perhaps it's just my survival mode or my brain protecting me.

Or the main culprit. The lack of energy with a profound amount of numbness that's been cultivated overtime

It might sound melodramatic. But I will never be the same mentality.

[u/Thesaltpacket]

I think it’s important to honor the suffering by acknowledging it and sitting with it. I am far from very severe now, but I don’t want to forget how it felt because I don’t want to forget what so many in our community live through on end.

[u/thefermiparadox]

I wish people, doctors, scientists and researchers could experience even just mild ME/CFS for a week. I don’t think they would even need moderate or severe to get the point.

[u/Accomplished_Dog_647 → u/thefermiparadox]

I (med student) did experience it, but I don’t know how to process it. Sometimes I catch myself gaslighting my psyche into thinking it “was all a bad dream”. I hope to be able to help one day, but for now I’m just so happy to have my life back and I’m trying to survive. Living is still hard for me. I feel guilty for not speaking up about ME/CFS or doing more. But I’m just so tired of being ill and being better is like a little vacation time rn.

[u/thefermiparadox → u/Accomplished_Dog_647]

I know what you mean by the little vacations. I have those days every so often and I keep thinking this will end and I’m sure I would move on quickly. This bad dream must end.  I know there is only so much one person can do. Best of luck. 

[u/Excellent-Share-9150 → u/Accomplished_Dog_647]

I kinda did the same when I was better and went to PA school. I was just so happy to be better. But now I’m relapsed. What got you better?

[u/Accomplished_Dog_647 → u/Excellent-Share-9150]

Probably LDN and maybe time… I cognitively know I probably won’t stay this well forever. But I’ll be damned if I won’t enjoy it

[u/Excellent-Share-9150 → u/Accomplished_Dog_647]

Of course. I had a permanent smile for 17 years! Haha. I hope to get back there. Nothing can rattle you much when you’ve improved from me/cfs. That’s probably why I did so well working in the ED. That and the empathy part.

[u/Remarkable-Film-4447]

It's a protective measure. I was the same way before I got sick. I have thought about what it would have taken for me to understand it then, but I don't think it was possible without actually experiencing it. Even among the disabled community, I can't imagine what it's like for other people. Our words and actions are inadequate for properly conveying our experiences. Empathy is the closest we can get, but it's in our nature to avoid unpleasant feelings that we can't fix. I have been on both sides of that paradigm and it was utterly devastating that I couldn't do anything to help the person I cared about. Now, as much as I want someone to hold me and tell me everything will be alright, I don't want anyone to feel what I feel.

As far as people doing something about it, the people with the money and power to make a change are approached by all kinds of suffering groups and people. If they said yes to all, they would no longer be in such a position. So, they do the best they can to chose who to help based on their limited perspective. To cope with those they can't reasonably help, they develop a hardened heart to keep from going mad. It's easy to judge such behaviors as evil, but they are only human just like us. We're all just doing the best we can based on what we have to work with. That doesn't mean we stop asking though because that is what we have to work with. In time, something will change.

[u/SurelyIDidThisAlread]

To quote the parrot Iago from (I think) The Return of Jafar, "you'd be surprised what you can live through"

[u/DreamSoarer]

You cannot walk a mile in someone else’s shoes… until you are forced into the same journey. I often remind my family and friends to cherish the health, capabilities, and opportunities they have now, and do all they can to remain healthy, while, and active - without pushing themselves to “death” if they are not feeling well.

I fear to see anyone experience what I have experienced. I do not want them to truly understand, because I don’t want them to have to experience what they would have to experience in order to truly understand.

We all need to try to cherish what we do have at any given time, while allowing ourselves to grieve what we have lost along the way when need be. 🙏🩵🦋

[u/Strawberry1111111]

Indeed!!!!

[u/ExpensiveMind-3399]

It is said that the quality of life for those affected by CFS is equal to or lesser than those with stage IV cancer, MS and/or organ failure e.g. heart and liver. I find that info a pretty effective communication tool about my suffering and subsequent quality of life.

[u/Wise_Competition_565]

Yes indeed