Every July, in spoonie circles, I begin seeing that it is Disability Pride Month. . .
And, every July, though I understand what is meant by this, the word choice – “Disability Pride” – just makes me all kinds of itchy, yucky, cringey.
While I can’t abide that phrasing, the idea – bringing awareness to the issues faced by people living with disabilities – is one I fully support and think is important.
So here, we observe Disability Awareness Month instead.
While everyone’s experience is different, some things are fairly universal – and this year, I’m going to share just some of the things I have witnessed or experienced since the onset of my illness.
First, with autoimmune disease, as I say often, part of what is so difficult and frightening at times is that it is completely unpredictable. New symptoms suddenly occur, any number of things can trigger a pain flare, what I can do from one day to the next – even sometimes from one hour to the next – is highly variable, and extreme fatigue just comes with the territory.
In the same way, having multiple autoimmune diagnosis – as many chronically ill patients do – it feels nearly impossible to get them all under control at one time. It is like the most frustrating game of Whack-A-Mole ever.
The fire is never completely contained.
In looking back at my health history, what began with a sudden GI bleed and diagnosis of celiac disease in 2012 has since snowballed into multiple debilitating autoimmune diseases including rheumatoid arthritis and complex regional pain syndrome as well as a diagnosis of immunodeficiency that has resulted in my being an MRSA carrier – with several rounds of sepsis and a total of ten surgeries over the past few years for the resulting infections. With each surgery comes a PICC line and weeks of home IV antibiotics as well.
All that to say, the situations that lead to disability are often incredibly complex – and can be overwhelming.
A major issue for me – and many other disabled people – that comes in dealing with all of these conditions is finding – and maintaining – proper pain management.
Because of the crisis of illegal opioid abuse in the US – and worldwide – it has become increasingly difficult for those of us who live with severe chronic pain to receive appropriate treatment.
Suddenly physicians are being required to taper patients from their stable pain therapy – not because of anything the patient has done or because the physician believes it is indicated – but because these new federal guidelines have been created to target illegal use – but are actually punishing those who legitimately need the medications.
As a result, in chronic pain patients who are experiencing these changes, there has been a 68% increase in overdose events (essentially in suicide and suicide attempts) and twice the incidence of mental health crisis.
I have written before about specific patients who have been lost because they could not get relief – and this is just so unfair in the disabled community.
The utter lack of compassion astonishes me.
In addition to dealing with all of the physical effects of our disabilities, the financial effects are often staggering.
For me, first, I finally had to give up my work in 2017 due to my illness, which – of course – was difficult in so many ways, including financially, while – at the same time – I was becoming more ill and thus accumulating more medical expenses.
This is a common occurrence in the chronic illness community.
Since 2017 – even with the excellent insurance my husband provides – I have had massive hospital bills for my many surgeries and admissions (with several hospital stays lasting upward of a full week) plus the cost of multiple rounds of weeks – really months – long IV antibiotic therapy after these inpatient stays. These are in addition to the “regular” cost of all of my many – MANY – maintenance medications and copays for office visits to see all of my doctors.
The financial burden of simply trying to stay alive essentially can be crushing.
Finally, there is added insult of being treated like a child or spoken over in public.
For example, I will never forget several incidents when my bestie/sister, Ginny, and I were travelling in Montreal. At the time, I was not at all ambulatory so I was in my smartchair for the entirety of the trip.
We were both absolutely blown away by how many people would talk to her about me with me sitting there. It happened so frequently that it was just surreal. When we went through customs at the airport to come home, the officer even directed all the questions for me to her over my head. What’s more, in the elevator in our hotel, one person was commenting on my tattoos – to her, as if I was somehow mentally incapacitated and she just had them placed on my body as my caregiver.
Sadly, this is not unusual – and it is important for people to be aware so that they don’t treat someone this way without even realizing what they are doing.
It is incredibly offensive and hurtful.
There are so many other issues to address, from accessibility – a constant problem – to disease research funding for many illnesses. . . and so many more. While progress has been made for sure, there is a long way to go.
As long as these imbalances and misunderstandings and injustices exist, we’ll keep on promoting awareness and educating and fighting for better.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.