CW: emetephobia, doctors, appointments, medication, rhuematologists, laser, acupuncture, physio, pain, diagnosis, ableism
It’s disability day and I’m disabled so I have some words to share
I have fibromyalgia, a condition largely characterised by chronic pain, brain fog, fatigue, pain responses to certain sensations, and many more symptoms. The true cause isn’t known but it’s theorised that injury, illness and trauma that occurs before the brain is fully formed at 25ish plays a large part.
And I have the trifecta; pneumonia and many chest infections, three broken bones, three surgeries and some horrible experiences all before I was 21. I started noticing I was really struggling on July 24, 2018, immediately after I arrived in London by myself for I five month trip including time at EdFringe and a uni exchange.
I kept my struggles and needs largely to myself but a few times I couldn’t (and can’t). There was a whole week where my newfound uni friends had to get me to bed and loaned me pillows cause my ribs were so tender they couldn’t rest on the matress. There were ten days where I had to be escorted to the bathroom. I used a lot of money ordering food in and spent a lot on pain killers in those five months.
Then I got home and continued hiding everything from my family. It got harder and harder to manage. Eventually my GP sent me to a “highly recommended” rheumatologist. I spent three hours filling out all the paperwork beforehand the first appointment. After reading my paper work and squeezing my finger joints to check for arthritis he diagnosed me with fibro and sent me home.
I went back a few weeks later to try and get advice and he made me cry four times within half an hour. I left and couldn’t see well enough to drive. The four steps at the front of his clinic that could easily install a ramp should have been a sign that he wasn’t the ideal rheumatologist for me.
So I found a new one who actually cares. It’s hard to find practitioners that actually care about chronically ill people, take us seriously and don’t accuse us of ‘faking’ or ‘drug seeking’.
She put me on a muscle relaxant tablet to try and help my sleep and figured out swimming helps.
And swimming and meds helped until I went overseas again and spent a month working at Edinburgh Fringe. I had a wonderful time but I returned from the most inaccessible city I’ve ever been to a bit worse off health wise. We’re talking constant nausea, vomiting, joint pain, memory loss and twitching. More than my normal symptoms.
So much so that I went back to my good rheumatologist despite hating appointments and we’re investigating arthritis at the moment.
And while that’s happening I’m doing my best. I’m able to leave the house because of the advice of other chronically ill people and the help of my parents. A family friend with endometriosis recommended a functional/integrated GP who’s reduced my vomiting with an appropriate diet and three medications. A friend with fibro, POTS and gastroperisis recommended a laser acupuncture place that has reduced nausea and some pain. And I found a physio how helps with chronic shoulder pain and recognised that my whole body has muscle patterning problems.
I’m incredibly lucky to have parents who can afford to pay for these treatments and investigations. I can’t afford it myself and the reality is that many disabled people who can’t afford help simply go without. The NDIS is hugely underfunded and largely mismanaged.
And this is just one obstacle we face as disabled and chronically ill people. We deal with constant ableism; in public and private spheres, online and in person. Many people are ignorant or misinformed. Some are deliberately violent. Some pity us. There are some able bodied people who have good intentions and want to help, but then assume what help is rather than asking.
And it’s hard to call it out sometimes. Disabled and chronically people get overwhelmed sometimes and just don’t have the energy or words to explain.
So on this International Disability Day I’m sharing for two reasons. One, maybe someone reads this and it sounds familiar so they decide to to seek a diagnosis (whatever that looks like; self diagnosis is valid, especially with appointments being so expensive). Two, maybe an able bodied person reads this and reconsiders their behaviour and starts working to learn more and be a better ally.
My favourite resource for learning is twitter. Some people to follow include: @BlondeHistorian @dominickevans @Tinu @Wheelie_Happy @HamOnWheels @VilissaThompson @painandcats @_sbsmith @bennessb @karriehiggins @ellenfromnowon @EbThen @twitchyspoonie @robinmarceline @PurpleGoddessWA @qjusttheletter @imognerq @JessHealyWalton @Imani_Barbarin @itsmollyeliza @Asher_Wolf @chr0nicallycute @SeeMiaRoll @bedboundbabe @blindandb0ujee @carlyfindlay @DisVisibility @ellle_em @annikavictoria_ @annieelainey @WheelsofSteer @briannasbell @ellenffb @TheLadyFuchsia @jeshyr @MusicElizaHull @MrBrokenEyes @Erinkyan @Keah_Maria @MsRachyDoodle @CaneInPink @OxleyAnnabelle @_Nic_Lee @cubbieberry @RustyHoe @BeingCharisBlog @UntoNuggan @tommyinboots @marastories @unicornthorn @jilly_peppa @Wooden_MariaGO @MortuaryReport @venusbetch @lizzylynngarcia @rollwiththepunches @4WheelWorkOut @TinyWriterLaura @laurawritesit @jaxjackibrown @jeshyr @JacdenHouting @SnoringDoggo @coffeespoonie @mssinenomine @GHMansfield @BlindFury_5428 @moonyeyed @myceliorum @Lilysea @BlytheByName @jessineave @JessicaOOTC
Obviously it’s a long list but every single one of these people have important things to say, taught me a lot so far and helped me get to the point where I’m proud to be disabled and I don’t hide what I’m going through anymore.