Updated: Aug 30, 2020
There is nothing more frustrating than multiple diagnoses, because when you don’t fit into a box, you don’t fit in.
Those of us with a chronic illness are used to not fitting in. Maybe you couldn’t run or do sports in high-school. And you couldn’t go out as much during college. You couldn’t walk too far, park too far, or do “sleep-overs”, if your illness meant having to be home.
For someone with a rare disease, a diagnosis is not a scary or a dreaded thing. For someone with an unclassified illness, a diagnosis is actually something we pray for. Hope for, even. Oh to be put into a box and finally fit in. Have a tribe. A Facebook group. A collection of people who understand you and your pain and your frustrations. Somewhere to finally belong.
Some people are never diagnosed and others have multiple diagnoses. I myself fall into the latter category, which most days feels like having no diagnosis at all. It is isolating in nature, and makes me feel alone in my disease. Having multiple diagnoses also makes me question everything and whether all the doctors could be wrong. Because if they were right, wouldn’t they agree?
Being diagnosed with multiple diseases at the same time means that it is up to me to pick and choose what applies to me and what doesn’t. Which symptoms should I watch out for from one disease? Which recommendations should I follow for another? At some point, once you realize that the doctors can’t commit to a diagnosis, you find yourself unable to commit to one either. Most days I am in denial of having any disease in the first place, because no one seems to fully agree on a single one. What if I have some undiscovered rare mutation that no one has ever heard of? And hopefully won’t be heard of again for years to come? What if I am never officially diagnosed with a single illness and I never find out what exactly it is that I have?
It may be that at the end of the day, only I will be able to decide what disease it is I have. I’m starting to learn that this actually gives me freedom as well as power. The freedom to decide what recommendations and symptoms don’t really apply to me. The power to have the courage to trust my gut. Deep down, I already know which symptoms affect me and which don’t. And I have the authority to document what helps me, what works and what doesn’t. This also gives me a fair amount of control as well as peace of mind, despite my disease.
No I don’t have a tribe. But I do have freedom. My disease wants to remain nameless, and that’s ok because I already have a name. This disease is just a part of who I am, and it can’t and won’t define me. It’s true that there is nothing more frustrating than multiple diagnoses, but with uncertainty comes the power to choose your own path forward. Sometimes it's nice to not fit into a box, because freedom can only be felt outside of those walls.