Idiopathic. An adjective ‘relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown’ (Oxford English Dictionary).
When I was 16 years old, I was diagnosed with Juvenile Idiopathic Arthritis (JIA). The first question I asked my doctor was what idiopathic meant. I thought it would be indicative of the nature of my disease – perhaps a cause, a symptom, or a manifestation… but I was wrong. I quickly realized that idiopathic meant nothing more than without cause… spontaneous. As someone who had always relied on knowledge as her power, I suddenly felt powerless. A disease that had already stripped me of much of my autonomy was now taking away my right to defend myself from it too. If I couldn’t know what caused it, I couldn’t treat it. If I couldn’t anticipate its occurrence, I couldn’t prepare myself for its return.
The diagnosis of a chronic condition is tough enough to accept as it is, but this added label implying its unpredictable and impetuous nature is an added weight to carry. How could one accept that the pain, discomfort, fatigue, and mental exhaustion that they had been experiencing would continue to come and go as it pleased? That, due to no fault of their own, and no known cause, they had been chosen to experience this for the rest of their lives?
This mental turmoil was not my experience alone, but is unfortunately felt by all those carrying the burden of one simple word: idiopathic. No matter what the condition is, individuals are all left in the dark with their diagnosis.
But there eventually comes a point where one finds familiarity within the darkness, and acceptance within the uncertainty. I am now 19 years old and no longer feel threatened by my diagnosis - and here’s why you shouldn’t either:
1. You’ve done this before, so you know you can do it again. You may not know when to expect the attack, but you do know how to respond to it. You know the strategies that allow you to feel better, to manage your symptoms, to regain command. Even though you can’t control your disease, you can still control your reaction to, and experience of it.
2. The cause may be unknown now, but medicine is advancing at a rate faster than ever before. The leaps we’ve made thus far have allowed us to face our disease stronger than we would have had it occurred 50 years ago, so we have no reason to believe the same won’t be true 50 years from now. It’s only up from here.
3. Regina Brett, an American author, once said, “If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.” This is not an attempt to devalue the extent of your struggle, but one to remind you to be grateful for all that is still good. We sometimes take for granted the fundamental privileges that we have that others may not. Whether it is a roof over our heads, a best friend to lean on, a supportive family, access to medication, or simply our favourite meal on a bad day - we can turn to it when we feel lost on our own.
After all, this disease may be a part of who you are, but it is not who you are. You have so much more to offer the world, and to receive from it - and if you can focus your vision entirely on that, the disease may just become a small, inconsequential speck in your periphery.