Though I understand its point, I haven’t been able to warm to the idea of Disability Pride Month. The wording is just too . . . awkward. . . for me. I am, however, all aboard for Disability Awareness.
And, goodness knows, there is much to consider.
I was just sharing with my bestie a Facebook memory from our trip to Montreal two years ago, when we tried to visit St. Joseph’s Oratory, the Church of Healing — and couldn’t get up to it, because I was totally confined to my smartchair at that time and it was inaccessible to the disabled. Really.
I was hearing the Soup Nazi’s voice in my head: No healing for you! :)
We still laugh about that — but it does point to a common issue for disabled persons. Though things have come a long way, much of the world is still inaccessible. I am deeply grateful to have come so far physically since that trip in terms of being able to ambulate again and even take stairs slowly — but I will always have mobility challenges that others just don’t have to consider.
For example:
- I am extremely heat intolerant; it makes me tire very quickly and I can easily become ill, something I really have to bear in mind living in the Deep South.
- I have stress fractures in every metatarsal in my feet, so, though I am able to walk on them (with discomfort), they give out and swell much more quickly than would someone else’s.
- I have balance issues and require my cane, Ellie, to assist me at times still.
Also, due to my Complex Regional Pain Syndrome (CRPS), I never know when my mobility status will change. I am, unfortunately, also prone to osteomyelitis in my feet and have had multiple surgeries, most recently last month, and this affects my mobility as well.
I have my cane, a rollator, and my smartchair all available if needed, so I am truly fortunate.
(When you are out, please be aware of those around you that may need a hand with doors or may need extra clearance as they ambulate. It’s not always easy to get around in a crowd, especially on those tough warm days.)
I would also say, when it comes to Disability Awareness, that my diagnosis that are not immediately visible are just as difficult to manage — and sometimes more so — than the ones you can see.
For example, my Celiac Disease was my initial autoimmune diagnosis. Not only was it sort of the first domino to fall, toppling all the rest it seems, it has led to a host of GI symptoms and also requires constant vigilance with my diet and food intake. For me, when I am exposed to gluten, among other systemic symptoms, like burning joints, headaches, and swelling, my GI tract bleeds acutely. It is a severe reaction.
Literally, as I’ve been writing this, my sweet husband ordered a pizza for me for dinner. When it arrived, it didn’t look right. As it turned out — before I had eaten any — the restaurant was out of gluten free crust, so, rather than call us, they simply substituted regular. Fortunately, we know what gluten free should look like. However, the manager was rude and unapologetic and I am so upset. I cannot imagine how horribly ill I would have been if had eaten an entire dinner’s worth of gluten. I would literally be hospitalized for a bleed.
This sort of thing is a serious issue, especially for the newly diagnosed.
It’s also a constant issue shockingly IN THE HOSPITAL where I can never get a full gluten free tray. It turns out it’s not just me: A spoonie friend who lives out of state was hospitalized for gastroparesis (a total shutdown of her GI tract basically) related to her Celiac disease. And when she was finally able to eat again? The first tray she received from dietary had regular bread on it that was labelled as gluten free. Thank God she recognized it — or she would have been in dire straights.
This is just one example of the issues with invisible illnesses that can be so life altering.
The other example I would mention is my CRPS, my chronic pain condition.
I am fortunate in many ways to have a high pain tolerance — but a CRPS flare can be beyond manageable. At its worst, it is one of the three most painful conditions in the world, a 46 of 50 on the McGill Pain Index. It is hell.
I have been one of the relatively lucky ones, in that though my CRPS is chronic and systemic, it did not stay in a stage one level of pain (as it does for some) and I do my best to avoid flares. Stage one is damn near unbearable, the body part affected feels like it is literally on fire, and no medication will stop it. Still, at any stage, it is an exhausting disease and some of its manifestations are really unpredictable — which makes it more frightening. What also is scary is the knowledge that a spread is always possible, especially with any minor injury or surgery.
I report all of this simply to say that, though my CRPS is less visible than my RA, it is often more difficult to deal with. Chronic pain conditions are life changing in so many ways.
As a chronic pain patient, a terribly unfair thing has happened to me in the past few months — and it has happened to many of my fellow spoonies as well. Our rheumatologist had to have emergency surgery — which, of course, he cannot control. However, he cancelled all appointments, does not have anyone covering for him, does not expect to be back until the beginning of August at least, and has left many of us without our routine medications we have been on for years.
As a nurse I have never seen anything like this and as a patient I never imagined anything like this either.
I have come to a point where I have had to gather my records to present to the emergency room in the coming days because I am about to be out of medications I cannot go without.
This is another example of the types of things that people with chronic illness deal with unfortunately.
As a result of dealing with many many issues with the healthcare system and doctors and problems like this — as well as having been quite ill not too long ago — I have some serious medical PTSD — and this is not uncommon in the chronic illness community either.
All of this is just sort of the tip of the iceberg to say that living with chronic illnesses and disabilities is a complex and life-altering experience that — unfortunately — can happen to anyone at any time. These conditions aren’t easy to deal with, and, while things are getting better, there is still a long way to go in terms of accessibility and in quality of healthcare. Also, some recent changes in narcotics laws have harmed chronic illness patients more than they have fought opioid addiction, it seems.
Please be informed and aware of what is happening in your community as well as nationally. Support candidates and laws that will ensure positive changes for the disabled community. Help your friends and neighbors when you can. Be kind.
We can all make things better.
