I read a beautiful article today from someone who was effectively “coming out” as chronically ill. She spoke of the struggles of admitting to the world that she was sick - of putting it in writing for everyone to see.
It says a lot about our society that people are so afraid to admit they’re disabled or chronically ill - but I get it. I fought the label for SO long. My illnesses are invisible - so I could generally hide how sick I was from other people.
Until I couldn’t. Hiding your true and authentic self takes a toll. Pushing through the pain, plastering a smile on your face and ignoring what your body is crying out for? It never ends well.
It’s a big part of why I started The Disabled Ginger. My hope is by sharing my stories and struggles - by being loud, vulnerable and honest about my disabilities - I can help others arrive at a place of acceptance faster than I did.
There was something else in her piece that’s been niggling at me though - which is that we share the same diseases and we were both diagnosed before they became “trendy” on social media. As a result - we have fewer barriers to care than younger women who are trying to get a diagnosis now.
This fact makes me livid. We should ALL be livid. We owe a debt of gratitude to the content creators who are making videos and art about these rare but not so rare chronic illnesses. If not for them many women would never figure out what’s happening in their own bodies.
The average length of time to a POTS diagnosis for a female patient is SEVEN years. Please read that again. Seven years.
That’s years of suffering with debilitating fatigue, tachycardia, gastrointestinal issues, fainting and more. Years of being told you’re “just anxious” or worse - a hysterical woman.
The people making videos and talking about these conditions are arming young women with valuable knowledge they can use to (hopefully) get diagnosed faster. Early diagnosis is key to avoiding worsening symptoms and setbacks. I had so many injuries from fainting - some permanent. How many could have been avoided had I know what was wrong with me sooner?
I so appreciate the author for writing such a vulnerable piece about coming to terms with being chronically ill. It’s a hard thing to do. Taking that brave step of putting it out into the world - of admitting to everyone that you’re disabled - takes courage. We should support the heck out of people when they do it.
Also I agree with her rallying cry - don’t feel sorry for us. Feel livid. Livid at the time it takes to be diagnosed. At how few treatments there are. At how much misogyny, discrimination and ableism we have to endure.
Get loud. Get angry. Let’s change things.
Article here: https://meandorla.substack.com/p/something-i-need-to-tell-you
My website The Disabled Ginger is here: https://www.disabledginger.com/
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