How Many Fights Can We Manage?
It strikes me that people with chronic conditions like rheumatoid arthritis (RA) have to endure a lot of fights. It’s not because we choose them or are especially argumentative people. It’s because so many aspects of life in our society seem to be willfully constructed against people living with a chronic condition or disability.
So many needless fights
For example, I’ve lost count of the number of fights I have had with health insurance about getting coverage for treatment, despite having paid (plenty) for said insurance.
Then I’ve had fights for the last two times I’ve needed a new wheelchair with the vendor providing service. The wheelchair company is fine, but the vendor delivering the wheelchairs consistently overcharges or tries to double the bill (or both).
Fighting for basic accessibility
I’ve lost count of how many times an accessible cab just doesn’t show, is canceled at the last minute, or I get asked, “Can your wheelchair fold?” when I use a 250-pound motorized wheelchair. (Hey, if you can fold it and lift it, godspeed. I don’t think even Dwayne “The Rock” Johnson could do that.)
Turning back to air travel, I’ve also lost count of how many times my wheelchair has been delayed in delivery to me or damaged while they loaded it.
These situations are avoidable
All of these fights are totally avoidable and not my fault, yet I am constantly fighting them because: justice.
Pay for medical treatment, health insurance. Don’t overbill me, scummy durable medical equipment provider (not that I’m bitter). Schedule a wheelchair cab and driver when I book it weeks in advance, cab dispatch company. Follow your own procedures on handling wheelchairs, airlines. This is also known overall as: do your d@mn job.
I resent having to fight
I hate it. It’s truly unfair that I have to spend my precious free time outside of my own job, making sure that these companies do theirs. I nag. I cajole. I sing (really, shout) into the phone.
On top of a painful, exhausting chronic illness, I have these additional responsibilities. And I know we all do, at one time or another. It’s awfully unfair that people with the least energy and resources have to spend so much of it fighting for our basic needs and rights.
It's not getting any better
I used to think it would get better. That eventually all these repeated failures and my complaints would magically turn into learning and transformation. “Why thanks for bringing this to our attention! We’ll promptly: pay that medical charge / properly bill you / dispatch an accessible cab / deliver your wheelchair from the airplane’s cargo hold. And so forth.
But I’m getting the message that they don’t actually want to change. There is no incentive until it is too painful for them to bear.
So now, I have kicked it up a notch. I’m becoming an expert at filing grievances with watchdog government agencies, notifying the media, and talking to attorneys. I’m not sure I’ve ever been patient (my husband shakes his head "no"), but after more than 40 years of this stuff, I am fed up.
Continuing to fight for what's right
So, bring on all the fights! I’ll take them on and whack away. They are all under the mistaken impression that I will eventually sit down and go away.
But the truth is, I’ve lived with RA for so long and had to keep going with no energy and constant pain that they have no idea who they are dealing with. I’m the person who just keeps coming back because the anger in my belly will not be easily quenched.
My rheumatologist has talked to me about how children diagnosed today with juvenile RA will not have the same level of damage due to treatment advancements. I want to make sure that when it comes to living with any disabilities they may have, the rest of the world improves as well.
How often you do experience an unexpected boost of energy?