The Uncertainty Principle
Fran Halsall on the consequences of a late diagnosis and living with multiple chronic conditions
Humans do not cope well with uncertainty, yet I am forced to confront it every day. People like me, with multiple diagnoses, can find that each new one brings not only clarity but also an extra layer of complexity that can be hard to live with.
When trying to explain my medical situation there are six diseases/disorders to choose from. Yet I often talk about multiple sclerosis first, despite the fact that on any given day it might be the least of my problems. There are reasons for this: people have heard of MS and it is taken seriously. It is an easy shorthand for establishing why my life has not turned out as originally planned.
By the time I've spelled out what MS is, and what it is not, bringing up another chronic illness seems rude. If, however, the other person is still interested I will talk about fibromyalgia, which takes even longer to explain. Often described as a diagnosis of last resort, fibro is a catch all for every pain and sensory abnormality the human body is capable of experiencing. MS and fibro share many similarities, so when asked what is causing my symptoms the honest answer is “I'm not entirely sure.” Welcome to limbo land.
My medical history is complicated and I suspect that having a mood disorder did not help my case at all. Years of pain and poor sleep slipped by, all of it dismissed by GPs as 'stress-related illness'. This reinforced the idea that the pain meant nothing, so I pushed myself harder - until I broke. My photography career lay in ruins because pain prevented sleep and I could barely drive. The work I loved became the reason for my agony.
With no relief in sight I returned to university to train for a more suitable career. After an intense first year everything caught up with me and I had to defer. Although I went on to complete my MA, by this point I was a shell of a human being. During this dark period came the realisation that no-one was going to help me other than myself. My one advantage was that personal circumstances meant that I could take time out to 'fix' myself. Yet I felt a crushing sense of guilt: society judges people harshly for slipping off the hamster wheel of employment, especially if they are thought to be malingering.
Relieving my pain became my sole focus and I returned to the GP to make a case for further investigation. First I was sent to a neurosurgeon – no musculoskeletal abnormalities were found to explain my episodic neck paralysis and other issues. While still reeling from the disappointment of travelling down yet another blind avenue I developed creeping numbness in both legs, which lasted for six weeks. This new symptom led to a diagnosis of fibromyalgia and I finally had a name for what ailed me, taking away some of the gnawing uncertainty that had blighted my life for so many years.
This validation was, however, tarnished by the knowledge that fibro is still regarded as the poor relation of the neurological disorders. One well-meaning therapist even advised me to have it removed from my notes. Fibro was long dismissed as a 'psychosomatic disorder'. This phrase makes my blood run cold; I actually hear “We don't know what is wrong with you, we doubt it as bad as you say it is and, because we cannot find a cause, we suspect it is all your mind.” No matter that there is no distinction between mind and body on which to hang this assumption. When speaking about fibro I feel obliged to emphasise the underlying neurological basis. This is what I do to be taken seriously after being doubted so many times. After all, thanks to years of uncertainty, I frequently doubt myself.
The deep irony behind these layers of confusion is that my leg numbness actually proved to be MS. In early 2017 I had another MS relapse manifesting as trigeminal neuralgia and loss of sensation in my right arm and torso. My handwriting became unrecognisable and my instincts were shouting: “MS!”. Several months later, and after staging an almost full recovery, the neurologist confirmed my suspicions. Receiving this news felt like an upgrade from the twilit land of fibromyalgia to the realms of the well-researched, although not entirely predictable, world of MS. Far from causing anxiety, as is so often assumed, this new information, despite its gravity, was a source of profound relief.
At first it was tempting to attribute every unpleasant sensation to MS because it can affect any nerve in the body. My neurologist soon poured cold water on this approach without ever really discussing the complex interactions between fibro and MS. The short answer is that more research needs to be done.
Fibro is a great imitator and the only way I have of telling it apart from MS is nuances in pain quality. MS produces hot, sharp, stabbing pains and muscle spasms aka paroxysmal symptoms. Whereas fibro tends to be an all pervasive ache that gets inside your bones, becoming better or worse in waves lasting days or weeks. It also tends to be distributed symmetrically, unlike MS. Both cause fatigue aggravated by 'overdoing it', however MS also causes lassitude, a temporary shutdown where even thinking hurts. Fatigue, aided and abetted by poor sleep, is now my biggest obstacle to living a 'normal' life.
In common with anyone dealing with overlapping conditions I have expended far too much mental energy trying to understand which symptom belongs with what diagnosis. We each have one body with a single nervous system linking it altogether and it is no wonder that people with fibro often wonder whether they really have MS. Hyper-vigilance over every sensation is an easy habit to fall into, however it also exhausting. Lately I have come to realise that dealing with the symptoms regardless of their origin is what matters.
Of course I can afford to be relatively optimistic; I now have diagnoses that verify my experiences. Unfortunately we live in a world that demands proof of just how ill you really are and without an accepted label to legitimise your symptoms you are all too easily dismissed. This is never truer than when seeking support from the state at a time when you could not be more vulnerable. In my case I could not ask for financial help because I knew that being refused (to my mind synonymous with being disbelieved) would smother what little hope I had managed to keep alive.
Society needs to acknowledge that the uncertainty arising from a lack of diagnosis can become as debilitating as the symptoms that drive the desperate search for answers. In fact the anxiety of not knowing can feed the underlying illness and make it all the more difficult to diagnose and recover from.
Fran is the website editor for the Chronic Illness Inclusion Project. She is the founder of Naturally Focused through which she helps people reconnect with the natural world, and improve their physical health and mental wellbeing.