Invisible disabilities and treatments: Navigating false starts

Back in the 2008, when our oversharing was done via the novelty of Facebook statuses, I wrote that my doctor promised my recovery in time for Easter 2009. Struck by the biblical significance of the timing, I told my friends naively to "await my resurrection".

Navigating medical treatments and the many false starts along the way has been a big part of my health journey.

Sophie Collins, in her poem 'Healers' writes:
I encountered a scaffold
Outside the Holy Trinity Church in Vladimir . . .
I said comforting things to the scaffold
But she only seemed to lean more heavily
Against the side of the church.
We are rarely independent structures she said'

Is ar scáth a chéile a mhaireann na daoine; no man is an island.

Jiu-jitsu and dyspraxia: ‘I feel capable and proud that I am finally able to compete’

---

Parenthood: There are three of us in this relationship now

---

Sails force: why competitive sailors train like Olympic athletes

---

Sleep deprivation: Try bedtime yoga, weighted blankets, or simply counting breaths

---

My own experience, living with an invisible disability has been that my chronic illness has resulted in my being (or feeling) more dependent on those around me. Not only has the support of friends and family proven crucial, but so too has the care of medical professionals.

Many readers have kindly written to me to express the comfort they have drawn from learning to accept their illness. They assure me that this changing mentality toward their illness has brought them some relief. While I would be willing to compromise for any small improvement in my health, ultimately, I want to be “better”. I often think about the terms “pain killer” versus the now more commonly used term “pain relief”. Although, the latter captures the effect of the drugs more effectively, I seek the former; for the pain to be “killed”. Thus, when it comes to the treatment of my ill health, I often place unrealistic faith in professionals in the hope that someday, someone will cure me.

The nature of invisible disabilities is such that, even in the doctor’s surgery, often the disability cannot be seen. We are relying on doctors to listen to an experience that their tools may struggle to capture. It is frustrating when attending the GP during a bad period of chronic migraine that the procedure tends to be the same each time – blood tests are taken, results are clear and I am told that there is nothing wrong with me.

Recently, during a somewhat heated media debate concerning a proposed tax increase on health supplements, an Irish medical commentator tweeted that such products are taken only by the “worried well”. Though the efficacy of health supplements is, of course, contentious, the phrase echoes a sentiment that is unfortunately common; “worried well” is a lens under which sufferers of chronic illness are often viewed. “I have just the cure for mild-mannered girls like you!” I was once told.

Not feeling heard

Often, unsatisfactory treatment can, as much as the outcome, be a reflection of not feeling heard. It is difficult to articulate a body that does not follow rules, a body that misbehaves. Pain is notoriously hard to communicate and can only be rated subjectively. Fatigue is exhausting to describe. Even the word is tiring to say. I frequently question the validity of my own pain.

Am I being dramatic?

Is it all in my head?

Can it really be as bad as I describe?

Years of navigating medical systems, battling to be heard, has seen a deep spring of frustration swell within me. However, the point of this article is not to berate the many wonderful professionals attempting to ease the burden. The frustration perhaps lies rather in the fact that there is no “cure” for chronic migraine. Pain “killers” do not exist.

Frequently, people are quick to suggest treatments that “you must try”. While these proposed treatments draw from a place of kindness, for reasons of self-preservation, one has to be discerning about the regimes in which you invest. Starting a new treatment is like beginning a relationship. It is an investment of hope in the future, a projection of dreams, a commitment of time (often money), feelings of excitement and uncertainty. Equally, a failed treatment comes with guilt, blame, exhaustion, lost opportunity and the heartbreak of what could have been.

However, continuing with the relationship analogy, some treatments are worth the risk. A wonderful consultant has recently taken me under his wing, determined not to cure me but to improve my quality of life. Realistic in terms of outcome, it feels important still to keep the flame of hope alive.

We are rarely independent structures, and a little support goes a long way.