Trigger Warning: Chronic Illness, Long Covid, Disability. Thread to follow:
It's really upsetting to see individuals with ME on here responding to people having Long Covid in a "welcome to our world/now you know what it's like to have ME" smug way. This thread will explore why it's harmful and unhelpful to react like this (1)
I have lived with fibromyalgia for most of my teenage years and all of my adult life. A lot of the symptoms of this chronic illness are present in ME. I have long Covid, and a lot of the symptoms I've experienced are characteristics of both fibromyalgia and ME. However they (2)
are much worse than anything I've ever experienced and are currently impossible to manage. I am not saying this isn't the case for others. And I do not have ME so can't claim to know what living with this is like. I have only really left the house for doctors appointments (3)
since Nov. It's 30 secs away but after visits my symptoms dramatically worsen for several weeks. It is also possible my heart has been damaged and I don't know when my cardiology appointment will come. While it is true that long Covid shares symptoms with ME and fibromyalgia (4)
at this point we simply don't know enough about it to conclude that ME is what thousands of people are living with post Covid. But I have seen this assumption. I am not in denial that this is chronic illness/disability as I have lived with both these things (5)
for too long to think my long Covid is not going to be something I have to learn to live with/learn how to manage over time. HOWEVER if we assume without research that long Covid is ME, which is what I keep seeing on here, we could treat it incorrectly (6)
and furthermore, if you live with chronic illness you know how easy it is for doctors to dismiss you. About a month ago I had a doctor tell me my long Covid was unmanaged fibromyalgia and that I needed to exercise and go back to work (7)
Neither of these things are remotely possible right now and it was so disheartening - particularly because I have lived with fibro long enough to know this isn't what I'm experiencing. I think ultimately it comes from a good place when (8)
members of the ME community reach out and say "you have what we have, this is what you can do" but the issue is that we just don't know that at this point. While I think it can be helpful and comforting to welcome long Covid patients (9)
into disabled communities and to provide advice on how to manage shared symptoms, I don't believe we should be diagnosing each other. And my main reason for writing this thread is that sadly I have seen a lot of discourse around long Covid patients (10)
thinking they deserve special treatment for an illness others have been dealing with for years. Even if long Covid is ME or fibromyalgia or CFS (and I genuinely don't think it is), why isn't the reaction EMPATHY rather than anger? (11)
I saw one thread recently with an angry sarcastic tone and it just feels like gatekeeping disabled communities. This is so upsetting after over a year of it being presented that disabled people are gonna get Covid, they have underlying stuff, not our problem etc (12)
In this thread I saw there was also a lot of victim blaming, suggesting people with long Covid thought they'd get Covid and be fine. This is so horrible because it implies we deserve to be chronically ill now. I did everything I could to keep myself and others safe (13)
I took it so seriously and was terrified. I remember being petrified of getting it or unknowingly carrying it. And even if long Covid patients did take that view, and weren't as careful as they should have been, they still don't deserve to be chronically and severely unwell (14)
This thread has been a long ramble but I'm honestly just very hurt at what I've been seeing. I would like to emphasise though that this thread is not aimed at the ME community or other disabled communities, just some members within them who I think need to be kinder (15)
At the end of the day we are all unwell, can we just support each other please? (16)
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