It’s nearly Christmas! Foggy is so excited in Thailand, I think he is driving Kat slightly crackers!
In a recent blog, I said that for the first 8 or so years of my illness, I played down the severity of my symptoms and many of my friends didn’t realise M.E was a big deal. Partly, due to my own sense of stigma and being uncomfortable being the ‘sick’ person in my group of friends. It has got me thinking about what life was like when I was employed and how life was back then.
Foggy followers who have supported us since 2014 will know that I used to work full-time in a university library. The timing of the onset of my symptoms coincided with starting 7 years of employment at the library. I was ill throughout my time there, though the severity fluctuated.
However, at the start, before I was diagnosed, I didn’t have a clue what was wrong with me and seemed to be off sick with a wide range of illnesses – ‘flu’, migraine, vertigo etc. Once I got my diagnosis 3 years later, because I had the label I had yearned for, I simply accepted my symptoms as Chronic Fatigue Syndrome (CFS) and, because I had been told there was no treatment apart from learning how to manage it with Cognitive Behavioural Therapy (CBT), I ‘got on with it’. Or at least, I tried to.
For years, I experienced misunderstanding and massive negativity from a few of my colleagues. I lost count of the number of times I was told that I wasn’t the only person in the department who had an illness and ‘they still managed to work’. I had no answer to this statement as I didn’t understand my own illness. If I had the same conversations now, I would be able to defend myself. Yes, I felt like I was being attacked.
I visited the Occupational Health team so many times, my personal file was HUGE! During every visit, I was told that working in a library was not suitable for someone with M.E. I know that now. But, what confuses me is that, if these healthcare staff didn’t know much/anything about ME/CFS how could they say that my condition was not compatible with my daily activities? I think I have mentioned this before, I had skin cancer 5 years ago and had been put on uber strong painkillers. They added to my slurred speech. During a visit to Occ Health, I was told they felt I was drunk and was not in a fit state to return to work that day. Well, slurred speech is also a symptom of M.E, they could/should have known that. I didn’t want my job to be put at risk so I stopped taking the painkillers asap. So I was continuing to work full time, with M.E and extreme leg pain from the surgery I’d had. I was so determined to not let my health dictate my life. I now know that I was being stupid. No job is more important than my health. Throughout my working life at the library, I downplayed my M.E due to being terrified of losing my job. I ended up leaving because of ‘working relationships’. With hindsight, I can see that leaving was the best thing I could have done. I seriously doubt that I would have been able to work full time for much longer anyway due to decreasing energy levels caused by stress.
I have ‘met’ so many other M.E sufferers that are currently in the same position that I was in at the library. They know that they don’t have the energy to work full time, they know that they are literally living to work at the moment. Daily activities are restricted to travelling to work, work, travelling home from work, eat dinner, bed. That’s it. They have no life outside of work because they save all their energy to earn money to support themselves. I can 100% understand their mentality. That was me. What I want them to understand is that M.E doesn’t give you a choice. You may well reach that point where you simply can’t work. Isn’t it better to determine your own path? Don’t let your health decide when you stop work. Find a plan B contingency plan for when you can’t be employed anymore. I am now self-employed (That’s why I have no money! If any of you need proofreading/social media marketing support let me know!) and can work to my own schedule, have rest days when necessary, and I can work from home/my bed!! Whoop!
Since starting Foggy work, I have always tried to be open and honest about my symptoms to try and raise awareness. However, I have recently realised that I wasn’t as open as I could have been while I was employed because I didn’t want to risk losing my job. I was terrified that bosses would think I wasn’t up to the job. That was a huge fear of mine.
Us ‘mild’ sufferers are very lucky to not be bedbound/housebound. 25% of sufferers don’t have the option to work. Those of us that can still work need to understand that we are in a privileged position in the M.E community and should take care of ourselves and not be in denial about our limits. It also gives the general public the impression that M.E isn’t a big deal, that we are able to function normally. Pretending that everything is fine is only going to damage you and our fight for understanding. I understand that now……do you?
Ho ho ho!
Love from Sally and Foggy (OBVIOUSLY)