In the name of honesty and transparency, I'm going to tell you a story.
Within the last two years I've noticed changes with not only my vision but my eyes.
I noticed that they were often bloodshot or itchy, sore or watery.
Some mornings I'd wake with swelling around my eyes and they were scratchy.
I went to a professional, had a few tests done, was told all was well and got a new pair of glasses because, well, life is getting on a bit and so is my vision.
The symptoms didn't get better or go away and I put them down to hay fever (never had hay fever), burnout, migraines (I've always had migraines but they were also significantly increasing).
I just kept on keeping on.
Within the past three months I noticed, however, that I would sometimes experience entire spots of my vision missing, so that where I would read or type, there were entire words I couldn't see.
I've experienced this before with migraine aura which is when I would lose vision, etc without pain and so I wondered if it was that.
In the last month, I lost my glasses.
I looked high and low and couldn't find them anywhere and I noticed that my vision had absolutely, without a seed of doubt, dramatically changed.
Double vision, blurriness, all of it, interchanging.
So, I needed to replace my glasses that I was unable to find.
Lockdown meant my usual professionals weren't in operation and so I was forced to go elsewhere.
Having not been there before, I needed an eye test.
That eye test turned into a series of eye tests and questions and puffs of air into my eyeballs (a horrific sensory experience), and me with significant challenges answering questions around what I was able and unable to see.
What a wakeup call.
Those two years ago when I originally visited a professional, I told them my symptoms and that I was concerned I may have had Glaucoma.
I told them as an autistic person, I was highly aware of changes to my body and when I had looked into my symptoms, they pointed to Glaucoma each and every time.
I knew I sounded dramatic.
I knew I would not be received well.
I have a long, drawn out medical history of taking my symptoms and what I've researched to medical professionals and being treated as though I experience health anxiety and don't know what I'm talking about.
In fact, so many of us in the autistic community have experienced this.
At my original appointment, I was told that we are all on the spectrum somewhere.
I was told I need to find a GP I trust to work through my anxiety with.
Off I went with my glasses and a pocket full of shame and got on with my life.
On my 21st birthday, I was diagnosed with Crohns disease after seven years of GP visits, pain and illness.
At 24 I was diagnosed with Endometriosis after eleven years of debilitating, disabling pain that I consistently sought help for.
At 33, I was diagnosed autistic after a lifelong battle with mental health among a plethora of other things.
At 34, I was diagnosed with PDA and Fibromyalgia.
At 40 I was diagnosed with ADHD.
And three weeks ago, at 41, I was diagnosed with Glaucoma.
I was told my vision will gradually decline over time but it will be slow, very very slow.
And, I am okay. Better than okay.
But I want to highlight this:
Autistic people, neurodivergent peoples' thoughts and feelings, our intuition and our interoception is often something we are highly attuned to.
Not all of us, but many of us.
And, we are so often overlooked because of the way we communicate, the information we present, for a number of reasons.
It's so hard to develop trusting relationships with medical professionals who disqualify our intuition.
It's traumatic to be medically gaslit.
This story is much longer than I had originally intended but there are so many stories out there in my community of people going years, knowing there is something not right with their health and not being taken seriously or being heard.
I'm in the process of working out a plan of treatment and so I'm having to cut back on a few things I'd normally do to reduce brain and eye strain.
I've been forced to cancel two webinars, and it's incredibly frustrating, and I am so sorry to those who have already been so incredibly accepting and gracious but I wanted to show up here and be real so people understand there are valid reasons behind some of the changes going on at present with the way I deliver content.
Sending love and solidarity to my kin who have been here with their health.
Sending gratitude and appreciation to my community and clients for your patience and understanding.
Image Credit: Dhyamis Kleber
(Image description: A close-up photo of the right side of a woman's face. The camera is zoomed on her eye and eyebrow.)
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