Thread by @surlaplanche_, since it’s M.E awareness month I’m going to add a post each [...]

since it’s M.E awareness month I’m going to add a post each day starting with this to explain what the name of it actually means. I don’t like using the phrase chronic fatigue as people think it’s just being tired which it isn’t. Fatigue is one symptom of many & is indescribable

M.E is a chronic neurological, debilitating and invisible conditon. It is classed as a disability and affects up to 17 million people worldwide (with many more cases not diagnosed) The majority of sufferers are women (unknown why) but it can still occur in men and even children.

M.E is so misunderstood which is why it is so hard to diagnose. So little is known due to lack of research. As a result there is no cure as of yet and no one really knows why it appears. I have had to inform countless doctors what it is that I have which is worrying in itself.

After being pulled out of my bed & having to crawl to use my bathroom because I was in so much pain, I was dragged to the doctors aged 17 to try get help for them to say I was ‘just a lazy teenage girl’ & my mum needed to ‘back off’ luckily she didn’t listen as my symptoms just

got worse. I ended up lying in A&E & in countless hospitals, the light & noise around me being unbearable (another symptom) for doctors to test me & say I had nothing wrong with me according to the tests, basically insinuating I was hysterical & was making it up.

The continuous & neverending medical gaslighting started to make me question myself whether it was all in my head. Luckily my mum pushed for paediatrics (just made it in as I was 17). There I happened to be diagnosed by a psychiatrist of all people who said I had classic symptoms

of M.E. These are some of the many symptoms (both physical & psychological). Not every M.E sufferer has the same symptoms as the next & our experiences differ as well as the severity of our fluctuating condition.

a high percentage (it was in the 90% but sadly can’t find the poll now) of doctors think that exercise helps recover from M.E. PLEASE. DO NOT LISTEN. It has been proven to actually worsen the condition.

some studies suggesting possible explanations of differences in the bodies of people with M.E

Not only are a lot of us suffering from all of those symptoms, many of us are grieving. We are grieving the able body we once had, the friends we lost due to being housebound or bedbound, family we haven’t seen, missed childhood/teenage/adult years, just being isolated as a whole

We also have to live & deal with the stigma & misconceptions of M.E not only from the public but also from friends, family, the government & even doctors. This is again due to so little bio-med research & funding and basic understanding. Because of this many have to hide our pain

The stigma continues in workplaces & school/university, again with no one understanding. One person on my course even called me lazy. I have also been advised to leave my course despite earning 2.1s and firsts all year. These are just a few examples of my personal experiences.