When you are poorly you visit your GP and when your GP is not trained to deal with the niche issue he transfers you to a person who is more trained to deal with the issue than you and him. In the event, you are referred you are hopeful that the person will offer you support and treatment. The sad reality for most living with chronic illness, a consultant is as much use as the chocolate palace Willy Wonka built-in Charlie and the Chocolate Factory. As you read this, we start the ME Awareness Week. An awareness week that reminds patients of their isolation discomfort and which lays it all to non-chronically ill patients. If you’re a reader whose loved one has ME or you wish to support a friend, relative or colleague with ME try to understand their suffering before you question whether they look poorly enough. For the majority of patients, their pain and discomfort is invisible with no visible evidence of their pain and suffering.
I have lived with ME for four years and have experienced ignorance and misbelief from all angles. My family have told me that because I look fine I must be fine and my nerve pain is compared to anxiety. A comparison that is similar to the belief of sceptics and those with medical degrees. 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. Whilst, employers and friends ask why I’m fine on one day than another day, being unable to walk or speak eloquently. I sometimes question my own pain when family, friends, colleagues and even medical experts dismiss it; a chronic illness means you question yourself wondering whether the pain, suffering and upset is all real and genuine with those around you questioning it/
With much of my pain based around nerve damage, fatigue and cognitive inability I have been referred to many neurologists. In four years I have seen two with two neurophysiologists in the mix too. The four combined equal to seeing my two canines for medical support and answers. In my experience, their approach to patients is poor lacking in people skills and empathy. With my known cold-hearted ways, even I own more empathy than my allocated medical team. We put our faith pain and discomfort-into the hands of our medical team. We see our medical team as the holy grail, placing them on a greater tier. We are told when in pain our doctors will support, diagnose and treat. The sad reality for ME patients is that they are faced with few medically trained professionals who do not understand or want to understand the complexity of ME. The pressure, salary and knowledge mean they hold an enormous amount of power yet do we have a choice? Who else do we see in the face of pain, agony all whilst we’re in the unknown too? A great number of people who are diagnosed with ME or being treated to prove this theory, experience more disbelief than validation. I compare the situation to imposter syndrome which applies to young professionals who question their ability wondering when they’ll be caught out. Many believe they got the job by luck so will question their ability. I wrote about this theory here. This is applicable here in the ME community; the patient needing to constantly prove they’re suffering to get the adequate support they rightly deserve. This, unfortunately, happens too often for patients living in the ME Community as you and I are more than aware. Many patients often spend months having to prove they’re in pain or experiencing discomfort. From my experience, when I’m told I look well whilst in a great deal of pain this is aligning with many chronically ill patients having to prove they’re in pain because friends, family and colleagues want to show it’s not as bad as it is for the patient.
In 2017, when symptoms became unbearable I was referred to a female neurologist who had no classic bedside manner I consider it important for doctors who specialise and discuss such a complex body system like the brain and its nerves. For those who read ‘bedside manner’ as having a great libido and stamina in the bedroom; this phrase in fact is a doctor’s approach or attitude to a patient. Once she had diagnosed me, she sent me back to my GP with nothing more than a letter with ‘Chronic Fatigue Syndrome as the subject of the letter. At the appointment, she told me I should gradually build my exercise tolerance up in the hope I’d return to the state of physical health I had before falling poorly. This approach is the gradual exercise therapeutic approach which believes that patients can somehow find the stamina they had before ill. The reality for the majority, 1/3 end up worsened after attempting any form of exercise.
I returned to work on a phased return which she approved of, only to find myself back on sick leave weeks later following a sudden increase in hours and activity. At the same time of this lapse, I’d also found my mental health suffering this is no surprise. It is well documented that those living with a chronic illness are twice as more likely to develop a mental health condition such as anxiety or depression. With an anti-depressant prescription not improving my mental health or physical symptoms, I later returned to the GP who at the time said I would recover within three months. This was in the January of 2018. 6 months before I’d made an appointment about feeling tired all the time with exercise making it worse and numbness in my hands and feet. We are now four years since the first diagnosis and this strange prognosis from my GP. In four years, have we made a shift in the patient versus doctor dialogue?
For my GP, the answer would be yes. In the last year, he has been more sympathetic, empathetic and understanding of pain and the effects chronic pain has on an individual’s mental and physical pain threshold. Is this him completing CPD? I doubt it, I wonder whether the long covid and post-viral fatigue’s prevalence in the press have put long term conditions such as ME on his radar. We have touched upon in previous discussions the clear parallels between MECFS and Long Covid despite being clear differences too. The stark similarity is doctors questioning whether their patient is lying or in a delusion. Fast forward four years later I returned to the GP with a flare in nerve pain to find the new neurologist to be even less helpful. I don’t like to put all neurologists into the same camp but in four years I’ve seen insulting professionals who put me under a considerable amount of distress and worry. My favourite line ‘could you meditate on this numbness‘ and my favourite comes back when people use this line. ‘If you were punched in the face hard, would meditating make this painless or the bruising go away?’ Most answer no and this also applies to chronic pain. GP vs neurologist, the GP is becoming more thoughtful and understanding than the expert in the field. The same expert who is diagnosing other life long complex conditions such as MS, Parkinsons and Motor Neurone Disease. Upon the initial examination, my neurologist regurgitated the same information, the previous neurologist and colleague had written in my notes. Neither helpful nor effective. He even replicated the same tests his colleague requested and learnt they would not be able to support a diagnosis or treatment plan for small fibre neuropathy. Despite the clear issue with the test, he repeated the process testing for sensitivities, by putting pins in my feet. Similar to the previous experience, I couldn’t feel the pins, so the neurologist suggested a 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. CBT has been proven to not be a successful treatment. Most CBT practitioners believe that CBT should be used to accompany acupuncture, massage or physiotherapy. It should not be seen as treatment or sold as one to newly diagnosed patients. Up until May last year, I had managed my symptoms for three years. I felt like my nerve pain had gone into remission since I had no tingling, burning or pins and needles. Before referring me to Mr Unhelpful, my GP tried several medications including; Gabapentin, Pregabalin and Amytripline all of which did nothing but upset my body. I experienced nausea, drowsiness, slurring and insomnia alongside the existing issues. In my case, the side effects of the tablets were harder to tolerate than the pain I’d declared to my GP. My neurologist claimed I was the issue because the traditional medication was not resolving the pain or issues as I was sensitive. This is quite surprising because in recent months there has been a review of prescribing medications to chronically ill patients. 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 macintosh to tell you that in three years without consultants suggests I’ve learned to cope and manage as best can be. In the last year, this has been all too much to endure without some medical intervention.
The emotionally draining appointment in November angered and made me incredibly upset by the lack of support I received from 1) a private clinician and 2) the reluctance to treat the presented problem. He saw ME and saw it as a scapegoat. Consultants who suggest a pain clinic for chronic pain are usually wanting a fast discharge. The pain clinic saves time and most times the teams working in pain clinics typically prescribe very cheap and available treatments. In most cases, patients are told to think differently and try yoga. 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. Most recently, I attended an EMG at King’s in London with a gust of fresh air. The testing physician who we’ll name Ali today said, ‘I really find the MECFS diagnosis frustrating because it provides the patient with a label nothing more. It doesn’t give the patient anything. He was the first neurologically trained physician to take my side. He also felt my dislike towards his colleague- he claimed neurological consultants are usually unequipped to deal with life-changing illnesses. This was the first time, I’d a medical professional on my side. I felt validated and heard. The two neurologists who I’ve had the delight of seeing (sarcasm intended) have been poor communicators offering me little support or therapeutic advice. In the case of the tester, he took the symptoms I was presenting and the anger I had towards my neurologist and referred me to a colleague internally who he thought would offer much more focused advice around small fibre neuropathy and chronic pain. I dearly pray and hope that the new consultant sees pain clinics with the same view that I have and can offer A) treatment and b) support and advice.
With the change in NICE guidelines pending and being effective anytime now, we are at the start of a possible change in the dialogue between patient and doctor. Unfortunately, many of the neurologists available to patients presenting my symptoms too, are ones who were training and getting their qualification at the same time of ME being known as ‘yuppie flu’ which means the changes in guidelines are the starting point for real change, not the end. We must train our medical students whether through ME clinic experience or chronic pain to prevent another wave of medical professionals offering insulting which rings a real similarity to medical gaslighting. Those at the time of the yuppie flu belief are the doctors who need an evaluation of their practices before we cause mental harm to the present and future patients with ME symptoms.