We have all been there. The horrible Drs appointment where the Dr hardly looks at you, doesn’t really listen, probably throws a prescription at you and you leave either so angry you could scream or in tears. Even before I was diagnosed with a chronic illness I experienced a few appointments like this. Once you have that chronic illness diagnosis though…… I think it gets 10 times harder to be taken seriously by some Doctors.
In my town there are not very many Rheumatologists and since I cannot work, I am on Medicaid and the state insurance so that severely limits who I can see. The first time I saw my Rheumatologist I left in tears. First of all, even though she did diagnose me as having fibromyalgia and early degenerative arthritis in my hips and lower back after a pretty thorough exam (good thing), I felt like she was more than happy to push me off on my GP to treat my fibromyalgia and get rid of me. Second, she kept telling me that inflammation had nothing to do with Fibromyalgia and Autoimmune Disorders (huh?) and asking if I had read anything about them. I said of course I had and everything I read said they did. It rubbed me the wrong way. I felt talked down to and treated like I was an idiot. So, even though the appointment was successful as far as outcome, I left not liking this DR at all.
My next appointment was kind of the same in that I felt like she was wondering why I came. It was a year later and I was following up with her because my disability case was coming up and we would need a statement from her. I had gotten worse and wanted that documented. I still was not happy when I left. Again, I felt like she treated me like an idiot. However, my special ed training had picked up on the first visit that she might be on the very tippy top of the autism spectrum and I was pretty positive of it after this visit. This might account for her lack of bedside manner.
Yesterday, I had an appointment with her. A couple of months ago, I started experiencing pain, weakness, numbness in my arms that was new and progressed at a very quick and noticeable rate. My GP wanted me to schedule to see her when his blood tests came up negative. So I went. Unwillingly. Unhappily.
Guess what?! It ended up being the best appointment I have had in a very, very long time with a DR. She sat down with me for about an hour and listened and asked questions and ordered tests and didn’t treat me like I was crazy. She didn’t blame everything on the fibromyalgia. She told me I was right to be concerned and I was right to come in to see her. She said she would call me with the blood test results. She was understanding and treated me with respect. I left feeling understood and validated. It was amazing and wonderful.
What was the difference? I can’t say for sure but I was better prepared this time. I took a list of all my medications, of course, with dosages. Standard protocol I know. I also made a list of all new symptoms since my last visit that was detailed enough to help me remember what all I needed to tell her about them. I made a list of all the questions I wanted to ask. I also included a picture of the female body with a color coded depiction of what my pain looks like. She commented that that was a very good idea. I will attach the blank document for that if you guys would like it. I have found it helpful. I have a male and a female. There are lines at the bottom for you to do a legend of what the colors on the chart stand for. Also, just FYI, the sex organs are blocked on the papers you will print. Just click on the links below.
I know how terribly frustrating and demoralizing it can be to deal with Doctors when you have a chronic illness. And we see A LOT of Drs. However, by making a detailed list of new symptoms, any questions or anything you want to discuss, and filling out the pain drawing so he/she can see just how widespread your pain is, you are empowering yourself to take control of your health. Don’t be afraid to Google stuff and print out articles to show your Dr if you need to. Don’t take 20 articles in there but one is okay. Information is power.
I hope this very long (sorry) blog post had something in it that will help you at your next DRs appointment. What kind of tips do you have for us? Please comment and let us know what you do to be ready for those appointments.
We CAN do this!!
We WILL do this!!