I’d almost forgotten how much power my physicians have over me. Until this week. I had gone to one of my specialists with my usual list of questions, including a request to renew my handicapped parking hang tag. This doctor hadn’t originally prescribed it, but since they were treating me for some of this things that make it hard to walk sometimes, I figured it was highly likely that they’d be willing. I use it off and on, usually a few times a month unless my flares are really awful.
And oh, no they weren’t. Not at all. In fact, they told me that the law in Texas is very strict, so they could only give handicapped parking to people who were unable to walk more than 200 feet.
I froze inside.
I got that shrinking, swirling, brain static feeling that tells me shame is showing up. The feeling that I did something I wasn’t supposed to do.
We finished our visit, I stumbled out to make my follow-up appointment, and I headed out to the car (which was painful, because it was one of the days when I really need that tag. Which I still have because it hasn’t expired. Yet.)
Driving home, I was able to get myself to move from shame to anger by looking at my request and the doctor’s response in a larger context. For example, I strongly believe that access to aids and adaptive equipment is a right and that people with invisible illnesses deserve them just as much as someone with a visible disability. I also know that fatphobia and ableism often shows up in doctor’s offices in sneaky (and obvious) ways.
Then I got mad. Really, really mad. Mad wondering if this doctor was implying that because I am fat, I need to walk farther even if it’s painful or difficult to do so. Mad wondering if the doc was thinking that my health problems are all due to my weight, so it’s my fault and I should suffer. Mad wondering if this doctor felt that it was actually doing me a favor and “saving” me from fatness by not giving me a tag.
I moved into rage when I looked up the Texas form again and saw that he was WRONG. It says “200 feet without stopping to rest.” He’s never seen me walk 200 feet on a really bad flare day or a super-hot Texas summer afternoon. What’s more, there’s a whole list of other criteria that could be used to justify a tag, and this 200 feet deal is only ONE of the possible options. I qualify under some of the other ones.
I went further into the red zone when I realized that this specialist sees lots of people who could benefit from handicapped parking, people who might have more severe or more constant limitations than me….and this doc might be denying them tags too!
I decided what to do next.
These steps could also be used with situations at work, insurance companies, etc. They aren’t for emergency situations, of course. More for those times when you’re caught off guard and have some time to decide what to do.
Step One: Don’t do anything.
Really. Give yourself a little time to just sort through all the stuff that’s been stirred up inside you. And exhale.
Step Two: Take care of any physical needs.
If at all possible, do what your body needs. If we are hungry, sleep-deprived, or desperately needing to pee, we are not going to be effective.
Step Three: Figure out what you’re feeling.
In my example, I cycled through a number of different emotions: shame, disappointment, fear, anger, rage….it took some time for them to show up, have their say, and move through. I needed to take the time for that to happen so that I could get all the information my emotions had to share with me.
Step Four: Figure out your key talking points/requests.
Once I had lunch, drank some water, and endured the feeling parade, I realized what was really bothering me was that this doctor was misunderstanding, or at least miscommunicating about, these regulations. It felt most important to let the doc know that so that other patients didn’t end up in the same situation, even if the doc still didn’t feel comfortable giving me a tag. I have other physicians I can ask, but other patients might not.
Step Five: Communicate.
This last step involves deciding how and when you want to communicate your talking points or requests. For me, it felt like writing would be the best way, so I decided to send a message through the patient portal. Some situations might be better dealt with in person, though, or by written letter or phone.
So there you have it. My adventure this week and some tips for coping if you find yourself in similar territory. Oh, and if you like tips and checklists, the Chronic Illness Companion is chock-full of tools to help you be more prepared and effective as you live the spoonie life.
Until next time, be sweet to your spoonie self!
