Hi my fellow sick, chronically ill and disabled, tired friends!
So what's this all about?
Good question! This newsletter is going to be filled with updates about chronic illness and disability:
News and Research
Life and Advocacy
Product and Book recommendation
Special issues with interviews of chronically ill and disabled people
So what's been going on?
Disability Pride Month is here - have any brands been collaborating?
I got a lot of new diagnoses (sort of?)
“I Fell in Love with Hope” a fictional book about chronic illness just got released
A new study on ‘Diagnostic Overshadowing’ is going on
What I learnt attending an event on Gastrointestinal issues associated with EDS
Product recommendation for those struggling with the heat
Disability Pride Month
That’s right, July is Disability Pride Month. There’s been some great information shared by plenty advocates and there’s even a new flag, designed to be more accessible and inclusive.
Disability Pride Month really started after the American Disabilities Act as passed in 1990. Since then Disability Pride Rallies have been held each year, mostly in the US and UK, but the number of countries participating grows (as does virtual engagement!)
Disability Pride Month is About different things for different people but to me, I’d say it’s about raising awareness about the worth and value that Disabled people have as well as the inherent issues, discrimination and ableism that they face.
This new flag was designed by Anne Magill in 2021. Here’s what the colours represent.
The Black Background: to represent loss of disabled life due to illness, eugenics, discrimination and more
Red: For physical disabilities
Yellow: For cognitive and intellectual disabilities
White: For invisible and undiagnosed disabilities
Blue: For mental illness
Green: For sensory perception disabilities
(From Valuable 500)
Sadly though, Disability Pride Month has yet to fully take off in terms of engagement and collaboration with non disabled people and brands. It’s something that advocates are working hard to change, and hopefully one day it will.
Some brands who have worked with advocates during this month though include: Schuh, and BPerfect Cosmetics. So I managed to find a grand total of two.
I got a new diagnosis (kind of?)
For those of you following my Instagram Stories or highlights, you might know that as well as my diagnosed conditions (Ulcerative Colitis, Chronic Migraine Disorders and Ehlers Danlos Syndrome) I’ve been struggling with undiagnosed issues for a while (3 WHOLE YEARS PEOPLE).
My undiagnosed symptoms have largely been autonomic and immune system related. I’ve quite honestly baffled most of my doctors about why my immune system is being a lil shit, as well as had my fun share of medical gaslighting too.
Anyways, early in July, I had an appointment with specialist dermatologist, who after hearing all my symptoms went off to go and chat with another doctor for a min (ended up being half an hour).
He then came back and said it seems I may have a mast cell issue. I know from research that mast cell issues are common in EDS, but they are not well characterised at all and a lot of doctors don’t fully validate or define them properly.
Either way, it was validating to get an idea of what might be causing some things, and I was actually prescribed medication!! (For the first time since my undiagnosed symptoms began). Sodium cromolyn to be precise.
BUT that’s not the end of the story…
Last week I saw my Rheumatologist who discovered that markers for autoimmunity and inflammation in my blood are still present. Because of this, I was tested for a bunch of different infections that all came back negative apart from…Lyme Disease.
Safe to say I was surprised. The dilemma? My doctor can’t tell if the Lyme Disease result is a false positive from autoimmunity or if I’ve had Lyme for years and it has triggered the autoimmunity (and perhaps to some extend my mast cell issues too)
So the plan is to try and treat both sides, Lyme and autoimmunity. But as many people with Lyme Disease know, once an initial course of antibiotics are taken…treatment guidelines are non existent.
It’s a lot of overwhelming information at once and I don’t know where this is headed, but I will keep you all posted on this wild and exhausting journey.
I must say it’s a very unusual feeling to be medically gaslighted and dismissed for so long and suddenly be told there’s probably a lot of pretty serious explanations for why you’ve been feeling so bad for so long.
If you’re undiagnosed don’t give up people. Please.
(Pro tip if you are seeing a doctor about a mast cell issue though, most people advised me not to mention my suspicions about it because there is a stigma amongst some doctors that it’s a condition many people self diagnose with. It’s about finding the balance between asking informed questions but not acting like you know more than the doctor.)
I Fell in Love with Hope is Out…and I can’t wait to read it
I Fell in Love with Hope is a fictional book about the experiences of a group of teenagers living with chronic illness written by Lancali.
Lancali has already attracted a huge following on social media with her Goodreads, Patreon and Wattpad account, and there has been a lot of hype about this book from her fans.
Lancali has been fairly open with the fact she lives with chronic illness herself, and how this book is partially informed by her own experiences, as well as the experiences of others with chronic illness she has met.
It looks amazing (and so does the art wow). So check it out and if you like it be sure to let her know - I know she’d love to hear from you!
Here’s the synopsis
Against the unforgiving landscape of a hospital, I broke the one rule dying people should always follow. I fell in love with a mischievous, sun-eyed boy who became my world. That’s what made it all the more soul-crushing when he chose to die right in front of me.
Since then, I’ve sworn never to love again. With three exceptions: my best friends Sony, Neo, and Cœur, a little hang that tackles every act forbidden to sick kids. Sony leads the charge with the air of freedom and one lung to breathe it. Neo, a bad-tempered and wheel-chaired writer, keeps track of our great deeds from stealing to terrorizing our doctors. Cœur, a gentle giant with a failing heart, is the muscle to help carry out the tasks.
Before death inevitably knocks down our doors, my thieves and I plan one last great escape that will take us far from abusive parents, crippling loss, and the realities of our diseases. So what happens when someone else walks through the door? What happens when a girl renders me speechless with her beauty and her mischievous smiles? What happens when she has suns in her eyes and as terrified as I am to lose again, I start to fall?
(Picture and synopsis from @lancalii on Instagram)
A new study on “Diagnostic Overshadowing” is being done
Earlier in July I posted on my Twitter and Instagram pages about the dilemma a patient with chronic physical symptoms experiences when being asked about their mental health.
This is because once a medical professional finds out that you have a mental health issue, or a history of one, they tend to automatically assume that your physical symptoms are caused by that.
That’s not to say that mental health issues can’t cause physical symptoms, of course they can, but people with mental health issues can also develop physical illnesses so this very limited and separated way of viewing health is dangerous.
This is something that a team at Deakin University Australia are now investigating, headed by Professor Alexander Mussap.
They’re calling it “diagnostic overshadowing” where physical symptoms are dismissed because of a pre-existing mental health condition or disability.
If you’re over 18, you can fill in this survey to help their research.
If you have any questions about the study you can email: mussap@deakin.edu.au
(Please note I filled in the survey myself but am not affiliated with this institution and have not done any background checks on the study. It’s your responsibility if you wish to participate to do any background checks if you wish. The study link has more information.)
Dr.Butt Gastro hosted an interesting event
On 14th July, Dr. Mohsin Butt was joined by one of the leading figures in EDS knowledge right now Professor Qasim Aziz to discuss gastrointestinal disorders in EDS.
During the event, both highlighted many gastro issues that are connected to EDS including IBS, GERD, gastric emptying issues and food allergy.
The most interesting question for me came from someone asking about their gastroparesis, and why their meds for it weren’t working.
Professor Aziz answered by urging the person to look into what actually might be the root cause of their delayed gastric emptying, in that the person may have delayed gastric emptying from another disorder - namely POTS.
Professor Aziz explained that because a lot of patients with POTS have hyperactivity of the sympathetic nervous system, this can manifest as the sympathetic nervous system impacting the gut - and the main part of the gut this system affects is the top part (your stomach and oesophagus).
So if the underlying cause of your gastric emptying issues is POTS, then treating POTS will likely, according to the Professor improve your gastric emptying.
Information and eventually a recording of this event can be found here.
(From @drbuttgastro)
Struggling with temperature regulation? Time for a neck fan.
There’s a heat wave going on in the UK right now and my autonomic symptoms, migraines and general self isn’t happy.
That’s why neck fans come in handy. If you’re able to bare the feeling of the fan around your neck, they’re a great portable way to cool down.
You know when you have a set of over head headphones around your neck? They’re like that only the headphone bits are mini fans, cooling you down.
Here’s some links to them on amazon.
If you have any stories or aspects of chronic illness and disability or you’d like to advertise something you’ve done or are doing in the newsletter hit me up!
That’s all for this time my fellow sick friends.
Nia
As someone with Lyme for over a decade, I can tell you it's quite the journey. If you ever need a shoulder to lean on or have questions, I'm most happy to be that for you. I would like to say that, from my experience in the LD community for so long, if you have a positive Lyme test you have Lyme. It's most likely not a false positive. Typically if anything a false negative is much more common. Sending my love as you continue walking your journey.
Nell