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How Chronic Illness Is Like a Spectrum

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In the last month I accomplished two things.

1. I received my long-term parking placard.

2. I hiked 2 miles for the first time in over a year.

If you’re scratching your head because those two thing seem to conflict, I’m happy to elaborate. Disability and illness is like a spectrum, and it’s more complex than you probably realize. Let’s take a look at how this works.

When I applied for my accessible parking placard, my doctor had to indicate my medical reason for needing a placard. The Oklahoma Department of Public Safety form offers options to help your provider indicate your condition:

a. Cannot walk for 200 feet without needing to rest.
b. Cannot walk without the use of or assistance from a brace, cane, crutch, another person, prosthetic device, wheelchair or other assistant device.
c. Is restricted to such an extent that the person’s forced (respiratory) expiratory volume for one liter, or the arterial oxygen tension is less than 60MM/HG on room air at rest.
d. Must use portable oxygen
e. Has functional limitations which are classified in severity as Class III or Class IV according to standards set by the American Heart Association
f. Is severely limited in his or her ability to walk due to an arthritic, neurological, or orthopedic condition, or complications due to pregnancy
g. Is certified legally blind
h. Is missing one or more limbs which limits mobility.

These placards are recommended by physicians because some of these conditions fluctuate quite a bit. Speaking for myself, I primarily qualify for my placard due to “f”, and also “a” in the winter. I have a connective tissue disorder (Ehlers-Danlos syndrome) that changes constantly. So while I have the muscular strength to hike two miles, I subluxed my knee three times on that walk, and my neck and a few ribs went out of place. Overall my joints were so sore the next day that I barely got out of bed. Some days my hips slip out of place and a hike like that would be impossible; my muscles are strong, considering my disability. Even my PT was impressed by this. When I have bad health days, It’s not because I did something wrong; we just never know what to expect from my body. Sometimes I’m hiking, sometimes I’m barely able to walk.

It’s not about how strong I appear, or if onlookers understand, but what’s going on in the bigger picture. I do not always need my placard when I arrive somewhere, but I could need it by the time I leave there. I do not always need my cane, but if I stand for a while I do. In the winter I need an electric cart at the store, the air is so thin that I use my inhaler multiple times on a single outing. Disability is a spectrum, but it also fluctuates constantly for each of us within our disabilities.

Many people look at ‘disability’ as though it’s a threshold… I’m here to tell you it’s just never that simple. We are people with jobs and hobbies and errands to run, just like the next guy. As part of my self care I will likely always have a placard in my vehicle, but I am thankful for the days here and there when I do not need it.

Originally published: July 18, 2018
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