An anonymous person with M.E. explains her journey from sceptic to ‘really getting it’. She shares how she found community online, and how she approached therapy. She takes us through her experiences in her own words…
Secondhand knowledge
Prior to me being diagnosed with ME I had very little knowledge of the illness. The only person I knew with it was my ex husband (father to my son) who developed it shortly after we separated. He didn’t say much about it. We weren’t really communicating for obvious reasons, the main one being he left me and moved in with my friend. His flare in symptoms and having to stop working always seemed to coincide with me approaching the Child Support Agency for maintenance. So excuse me for being sceptical at that time. In fact I called it the “me me me” disease because it was always about him.
I didn’t know of anyone else with it. In fact I didn’t really have anyone in my life with a chronic illness which caused fatigue or stopped them doing things.
I do remember newspaper reports about Yuppy Flu in the Daily Mail (sorry about that, it was a weird period of my life). I guess I didn’t question it.
I was very much a person who believed that mind over matter worked. I was less than sympathetic to people who had burnout or depression. I truly believed that you could train yourself out of all these situations. If I had read about ME at that time, I would have still believed it was burnout or stress induced and therefore an easy fix.
This was all in the late 1980s early 1990s.
Gradual decline
My decline into severe ME felt out the blue. I believed I was becoming unfit (despite twice weekly dance classes, the odd aqua fit and a physically demanding job). I was juggling quite a lot. I was in my late 50s so menopausal, carer for my elderly housebound Mum, fretting about my husband (we don’t live together) as he had unexplained syncope – which turned out to be a dodgy heart and needed a pacemaker – working and being involved in local politics and a women’s group.
Resistance to a stigmatising diagnosis
Doctor thought it was a post viral issue after a few months of tests and appointments because I was getting more and more exhausted as time went on. I was not someone who visited the Drs in the past – just the usual things. The Dr was lovely and understanding but had nothing to offer me. She wanted to diagnose me with Chronic Fatigue Syndrome. I resisted this for ages and only accepted Post Viral Syndrome.
I went into work and told my team I was signing myself off for a week and would be back with bells on. At the end of that week I had to get the Dr to sign me off. She did so for a month which took me over Christmas to the New Year. I was still convinced I’d be back. That was 2018 and I never returned. In January 2019 I declined suddenly until I was unable to do the smallest of tasks – talking, eating, sitting up etc.
Reflecting on time/energy wasted due to ‘anxiety’ misdiagnosis
With hindsight, and knowing so much more about ME, I realise I’ve probably had mild ME most of my adult life, together with POTS. I spent decades chasing treatment for anxiety (mostly not through the Drs). I had all sorts of talking therapies and counselling. Sometimes it felt like it was working sometimes not. I now know it was the POTS mimicking anxiety and not actual anxiety. I feel I wasted a lot of my life and missed a lot of opportunities because of the “anxiety”. If I had been diagnosed with POTS I might have had treatment and I might not have descended into severe ME.
Using social media to find a supportive community
So, armed with a diagnosis I began a Twitter account and put a few posts out. Someone generously welcomed me into ‘the club no-one wants to be a member of’. I soon had a good number of followers with ME. I learned to look out for the hashtag #ME or #pwME and so I joined that exclusive club. People were very generous and shared their knowledge. I soon learned the history of ME and how we have all been left to rot, really, with scant services and widespread disbelief.
Deciding on an approach that worked for me
Every step of my recovery from Severe to the lower end of Moderate has been from knowledge gained on Twitter from these lovely people. I soon learned that Drs would have little to offer me. I saw a pattern in that those who chased treatments and tests least seemed to make the most improvements. So, I decided not to put myself through the agonies of endless Dr and hospital visits and see what I could do alone.
No longer a sceptic
Of course my attitude to the illness has changed beyond recognition: I always hold my hands up and say I was sceptical. I cut people some slack if they don’t understand ME but I don’t do so if they have had plenty of people clearly showing and telling them how bad it is and they still don’t grasp it. I have no time for them. In real life or online.
Sharing my situation with colleagues
I was off work for 2 years before my job was terminated, so I sent some information for the staff on my first ME Awareness Day and wrote a detailed account of my daily life. I know it was sent to everyone in the organisation (around 200) but I don’t know how much was taken on board. My team members always believed me: I had never had a day off work sick in 8 years so they knew it must be bad if I wasn’t showing up.
Believing in myself and facing up to my situation
I never doubted myself once I had the diagnosis. I have never lost hope that I will one day be better. But I am reconciling myself to accepting I may never work again. I am 64 and even if I miraculously recover tomorrow, not many employers are going to take a chance on me for the time I have left before State Pension Age. (They would be lucky to have me!)
The only gaslighting I do to is to myself. I wonder if I should tell the DWP I have improved and then I take a reality check. I realise I still can only do very little compared to a well person. My FUNCAP score is the highest it’s ever been but it is still only 2.1. By most definitions I am high end severe/low end Moderate.
Because I feel so much better than when I couldn’t talk or get out of bed, I sometimes think I am better than I actually am.
The people around me believe in me
My husband and son have always believed me and supported me without being actual advocates or health zealots. They take their cues from me. My son is used to his mum being strong and independent (he’s 35 and I was a single parent to him from 3) and so I want him to still see me like that. It is very important to me. My (current) husband also saw me as the stronger one in the relationship and that still has not changed even though it clearly did for a while. My late Mum never doubted how ill I was nor did she put any pressure on me even though she depended on me. I got my indomitable spirit from her. I realise I have been lucky with the people in my life. Or I chose well!
My take on how to cope
I have no real words of comfort for others. It’s a horrible unrelenting illness which will take you over and rule not only your life but the lives of those around you too. My advice would be to look on X (twitter) for your tribe. Learn as much as possible about the history of ME as well as what co-morbidities are out there. These can often be treated to make life a little better. There will always be people better and worse than you. We all count, we are all struggling, it’s not a symptom Top Trumps.
Going against a lot of the grain I would urge people to get some counselling. Not to cure or treat the condition, but to help you cope. It can support you face the grief for your lost life help you accept where you are. Acceptance is not giving in. It is a kind way to treat yourself and let the illness live with you rather than control you. Negativity and stress exacerbate symptoms so try to work on those.
Finding the joy in the little things seems trite, but it becomes crucial for emotional survival.
Thanks to Vineet Pathak on Unsplash for the image at the top of this post.
