I found myself uncharacteristically furious in a doctor’s office this morning. I finally got in for a follow up on a bad rash on my hands. A rash bad enough that people would notice. I started telling people I had leprosy or mange. I started wearing bike gloves when off the bike to keep myself from scratching the skin off the back of my hands. There were days when I would have happily torn it all off to make the itching stop. I was furious because it took me a month of suffering to make the initial doctor’s appointment, and only then when I found myself explaining to yet one more person about the itch and the mange did I think to myself that this was ridiculous and a normal person would surely have gone to see a professional by now. I didn’t feel very respected or listened to by the first physician’s assistant, and he gave me advice to use nothing on my hands but water — no soap, no nothing — that is clearly not reasonable for the long term, and not really reasonable for the short term. Not even after using the restroom? No showers with soap for how long? When can I wash my hair again?
In addition to his unmanageable advice, he said he’d refer me to this other physician’s assistant with expertise in dermatology. Hope to hear from them by the end of the week. He saw it close to at its worst; surely it was obvious that this was an acute problem needing prompt attention? The wait ended up being about 5 weeks, and it might have been longer. Plenty of time for the rash to abate and get worse and abate again.
So there I was in this new PAs office, and I was angry. Angry for the unmanageable advice. Angry that it took me so long to ask for help, and when I finally reached out for help when I was suffering and that I got put off for 5 weeks, and had to argue to get seen as quickly as I was. Angry because the rash is not that bad this day; in its current state I’d never have bothered to make an appointment at all. Angry because she had nothing really new to say — I’ve heard this and read this stuff before — I know I have eczema on my hands, and I can easily Google the standard advice — I don’t need YOU for that. Angry because each practitioner you talk to has his or her favorite brands of lotion and soap, and is happy to advise you to use that. Not that any of them seem to make a difference. And what are you supposed to do with the other stuff you bought? Landfill it?
I know all this is unfair — not her problem, not her fault, not her job to put up with me when I’m not even slightly feeling like being pleasant about all of this. But there it was. It’s not even about the rash, or the wait, or the products, or the advice.
It’s about the other times I’ve been in crisis and I’ve reached out for help. To be told that it’d be 2 weeks or 4 weeks before I could see someone. When my phone calls weren’t returned. When I was not sure I could hold on. Those times I’d get in to see someone after holding on to hope for weeks and it would be useless. Each time feeling lost and alone, and left to struggle one day at a time forward, under my own power.
I know I’m one of the privileged, and if I’m finding it this hard, how much worse is this for those who do not have my privilege?
I’m so sorry, Jean Marie! My most miserable experience was with a rash on the back of my hand. Turns out I was allergic to the meds they gave, which made things worse. Doc said if I couldn’t get my Aggie ring off in ten minutes, I might lose my finger–and, by the way, the hospital didn’t have the tool to cut rings off. Hang in there, friend! Be as pushy as you need to be to get the attention you deserve!