Don’t you believe in ME?

Photos taken in August 2020 by Floirin Chapling

Dear Doctor,

It’s been three years since you diagnosed me and three years since I had to re-seek medical attention. Three years of managing my lifestyle, adapting my lifestyle and making significant changes to my lifestyle. Changes such as; altering my work location, ensuring work places were within under an hour’s journey away, had awareness of The Equality Act and of course taking additional annual leave to recover from certain activities in case the pressures of returning to work would be too tiring.  That’s only half the many changes I’ve needed to make in order to recover to what some would call a ‘normal lifestyle’. So, returning to your hospital to be told I needed to just see a pain clinic and get on with it was the result of years of misbelief within the community for chronic illnesses not just ME but the entire list of conditions. It aligns with the voices of the community who are unheard, misbelieved and told to think differently.

In a recent post, I discussed how GET and CBT were removed from the National Institute of Health Care Excellence and the implications these ‘treatments’ had on my first few months of diagnosis. I explained how the treatment at the time implied I needed help with my mental health in favour of the physical health. In some ways, incredibly patronising and in other ways it shows how little medical understanding there has been into Chronic Fatigue. This week, I went back to a new neurologist in the hope of some treatment for my agonising and progressing sensory nerve damage; causing lack of temperature gage, muscle weakness, inability to walk without a walking aid or be able to stand for too long. All of which is 24/7 being 9x worse at night times causing sleep disruptions also affecting fatigue. A double edged sword all in the hope of an understanding neurologist with a better bed side manner than the last. When pins were put into my feet and I couldn’t feel them into they went into my thighs I’m told to see the pain clinic which to all my good intention is offering similar treatment to the original NICE guidelines. Treatment that focuses on; mindfulness, CBT and thinking positively. I’ve managed my symptoms for three years with little medical support until this May when I’ve been relapsing on a regular occasion. New medication causing nothing but upset in my body; nausea, drowsiness, slurring or sleep issues yet I’m told that’s an issue on my part because I’m sensitive to medicines in this genre. Three years have seen me being able to change aspects and prevent relapses from taking place despite this being physically written down on medical notes I’m told that I should get on with it. It doesn’t take Bradley Walsh in a mac to tell you that in three years without consultants suggests I’ve learn to cope and manage as best can be. The emotionally draining appointment angered me and made me incredibly upset by the lack of support i received from 1) a private clinician and 2) the reluctancy to treat the presented problem. He saw ME and saw it as an easy tick off. No tests, no investigation and no treatment path. A pain clinic is an easy get off treating card, it saves time and energy into looking the case. Passes the buck onto someone else rather than him. I should add that I’ve heard good and bad from the pain clinics but the majority being bad and one describing them as ‘avoid like the plague’. A bad TripAdvisor one would suggest but perhaps, I should’ve been more complex.  It was like immediate dismissal from a job without a union rep. My underlining health condition being like an easy excuse for the Doctor to ignore my suffering despite walking in with a walking stick all of which seemed invisible perhaps aligning with the suffering. It’s invisible to the normal person but for the sufferer it is far from invisible yet the doctors are naive with pain.

I’ve had positive outcomes from CBT for OCD & anxious thoughts therefore I will never dismiss it as a treatment for mental health conditions. I will, however always discredit it as a valuable and creditable treatment for an illness which affects 250,000 of the population. The treatment usually leaves devastating changes to not just the sufferer but the family and friends too. I think, a healthy mindset is important for dealing with the diagnosis and the changes of a condition such as ME but this being a treatment is outrageous. Chronic illness is real and cannot be ‘cured’ by seeing a counselling but the person you speak to could help us come to term the changes that have happened. I found in the first six months of my condition that I was grieving the person I once was; the person who worked in the City, the person who went to the gym 6 times a week and the person who had endless amounts of energy without coffee or Pepsi Max. Counselling has definitely supported me, it’s helped me to see my illness as part of my life and not my definition. I want to emphasise the word ‘support’ that isn’t cured or treated. In the same way, chips are nicer with a kebab than couscous not fact or evidence but support the dish. However, the nerve damage that has affected my hands, feet and legs is not going to be talked through or helped via gratitude or positive thinking. Like couscous, CBT mindfulness are not going to help get me out of being numb. I’m at a point of thinking whether the neurology team will next question whether me rubbing a baking potato on my nerves might have a difference as their current options are quite similar. For those who’ve never experienced nerve pain, I’d like you to imagine having pins and needles in feet and then imagine those feelings all down one side of your body including your face. I ask, can thinking positively make those feelings less uncomfortable and less agonising? The answer is no and for the smart arses with us, do one. 

I feel that as an ME patient we are gaslighted into being told that these alternative therapies will eventually make us better or we think our way out of them. As I’ve mentioned in other articles, being told by various medical professionals to seek mental health therapies it’s no wonder why various patients feel like they’re not heard or symptoms are not real. Our pain, suffering and disbelief makes us question firstly our mental but entire physical health affecting how we think; questioning whether we are in pain and whether we are in real pain. The most amusing part of the entire relationship between my health & the medical professionals is that my suffering is felt by the other 250,000 sufferers, charities, family, friends and colleagues yet someone with a Doctorate dismisses me. In the research paper ‘Beautiful Faces in Pain’, T. Hadjistavropoulos found that doctors subconsciously assume that people who look ‘better’ on the outside are healthier and subsequently require less treatment. Perhaps my doctor is still very much a judge a book by the cover despite the vintage walking stick that I used to support my balance and walking ability.

Following the ignorance I endured by the consultant, I returned to my GP who was in fact more supportive and found it to be incredible time wasting on my part. He therefore referred me to an alternative hospital/neurologist who can disregard my ME and focus on the nerve damage that has affected my mobility. I’ll keep you posted, for your benefit these unhelpful blog posts do help in providing weekly passionate pieces of content.





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