There has been a lot of conversation around self-diagnosis as of late. Every so often this pops up, so let’s be clear:
Self-diagnosis is valid.
My journey
I was 90% sure that I had hypermobility, POTS, MCAS, & gastroparesis in 2016. I wasn’t diagnosed until 2019 – and even then, I had to use my activism background to seek out the right docs. Even then, I’m not formally diagnosed with POTS. It’s pretty clear that’s what I have and there are ways I can mitigate it without a ton of medical interventions so far. If and when I get to the point where I need to explore that more, the doctor who treats my hypermobility is there to pull that trigger and refer me to the right people. In the meantime, he’s helping me manage it.
In just a couple of years, the amount of testing I had to go through was really rough. I had scopes, nerve tests, multiple MRIs, X-rays, labs, and so much more. It was incredibly costly, even though I was in a very privileged position to have good insurance & a partner at the time to help me get through all of this.
Even before getting to the point of getting these tests, I was gaslit on some of these things by HCPs for years. That includes bringing up worsening vaginismus that wasn’t addressed for years and very negatively impacted both my quality of life and relationships.
I also knew I had PTSD in college, but that wasn’t diagnosed until 2015. That was easily 10 years of knowing without an ICD-10 code. It’s hard to find mental health providers, especially with insurance restrictions.
I am nearly certain that I also have ADHD – so much so that I reference it in relationships. That is especially difficult to get a diagnosis for as an adult, and I’m tired of trying to push through to get diagnosis codes. I may revisit if I feel meds might help.
Too many conditions get blamed on other things
I have experienced a lot of BS in the medical world, from blaming everything on my weight, past trauma, and transness to assuming I didn’t know what I was talking about as a younger ‘woman.’ (Cue internal screaming at the sexism, misogyny, and assuming people are cisgender.)
Providers and others have also assumed I want to collect diagnoses. I don’t. Don’t get me wrong – I’ll joke about it to be flippant because that’s how I handle a lot of stuff, but I’d love to not collect any other conditions. In reality, I’m finally untangling all that I have now that I’m getting treatment for things.
Being sick since childhood means attributing a lot to the conditions I had diagnosed because 1) I didn’t know any better, and, 2) I didn’t have medical care for a long time.
The latter is one reason it’s taken until age 32 to really get my health under control.
Once my SJIA was under control, the hypermobility was easier to see and diagnose because I knew some pain wasn’t just my arthritis for the first time in my life.
Providers often do not understand this.
If I had been taken seriously in 2016 about the conditions that I believed I had – and was right about – I would not have lost multiple years of my ability to work or really exist as a human outside of the internet. I lost years of my life because of others being jerks, not listening, etc.
When you encounter people who have self-diagnosed conditions?
Don’t gatekeep.
Don’t assume that someone saying they have a diagnosis is due to them seeking attention for attention’s sake.
Self-diagnosis is valid and necessary for many of us, even those of us who hold a lot of privilege.