What I wish people knew about being #Undiagnosed #ChronicIllness
Being undiagnosed is scary, and it's hard work navigating the conversations that come along with it.
What I wish people knew about being undiagnosed:
- it's not good news that nothing came back on my tests, it means doctors aren't able to offer a treatment plan or cure.
- even though you don't understand, it doesn't mean I'm exaggerating, and you don't have to understand why something is happening to be able to support me.
- everything you're about to suggest, I've tried or researched, and I am not in this position through laziness and lack of knowledge.
- I hope for test results that show something other than 'inconclusive', because that would offer me some validation that what I'm going through is real.
- "how are you still alive?" is never an appropriate question to ask someone, especially when you don't understand how hard they are battling to stay afloat.
- being called a "medical mystery" isn't the cool joke or compliment you think it is, I am totally unsupported as there is no service available for people with such complex issues.
- not having a diagnosis and not finding anything conclusive in scans does not reduce the severity of the symptoms and their impact on my life.
- don't say "at least it's not...", it invalidates my experiences, and well-known conditions aren't the only diagnoses that have a significant impact on a person's life
- my 'interesting medical story' isn't something to chat about with your friends, relatives and neighbors over a cup of tea; sharing my symptoms and experiences without my consent isn't okay.
- prepare yourself that I may never get a diagnosis, or that it could take years, and so maybe don't keep asking
- even though it has no name, I still need support
I want to tell them that because I'm undiagnosed, I've lost my home and education, my independence and my financial security, and I've lost your friendship and belief in me.
I want to tell them I'm not undiagnosed anymore, that there's finally a name, and when that happens, I don't want you to suddenly believe me because you needed years and teams of doctors to confirm what I have been telling you for all along.
But for now, I'm undiagnosed, and I'm valid.
I wrote a version of this post for my blog accounts on social media, feel free to connect with me on those if you're interested. #ChronicIllnessBloggers
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