“Stigma is a process by which the reaction of others spoils normal identity.”
Quote ~ Erving Goffman
To be honest, in the last few years I haven’t really encountered much stigma and to be fair, I don’t work outside the home. Due to the high levels of head pain and other migriane syptoms, I don’t even leave my house very much. But when I stopped and thought about it, I encountered a boat load of stigma, when my migraine change from episodic to chronic. My episodic migraine was controlled very well with a beta blocker, Propranolol for many years. I didn’t require an abortive medication. At that time, I hadn’t even heard of abortives or rescue medications. My education in migraine disease was sorely lacking. I had to stop the Propranolol when developing Adult Onset Asthma, beta blockers and Asthma are not friends. After stopping the Propranolol I entered Chronic Daily Migraine hell, where I still remain nineteen years later.
This is when I encountered stigma and remember my migraine disease education was practically nil at this time. Let me list a few situation where stigma played a big part, I just wasn’t aware of it at the time.
- In the workplace; I was working in a Family Practice Clinic staffed by three doctors and owned by the hospital that I had worked for since I was sixteen. These were doctors, they should be caring of a co-worker who was so ill, right? Wrong! They actually tried to fire me while I was in the hospital. Human Resources told them that they couldn’t do this. So they devised another plan and had it all in place the day I came back to work. Basically I was to report to the Office Manager at the end of my shift everyday and give an accounting of what I had accomplished that day. They couldn’t fire me due to my illness, but they could fire me if I was deemed incompetent of doing my job. The first two days I couldn’t find the office manager anywhere in the clinic, when pulled into a meeting the next morning, and asked why I hadn’t checked in with the office manager. I told them that I had been unable to find her, to which she replied, she had been in her office. She flat out lied. Needless to say they fired me because of this, I was devastated. A small side note: One of the doctors was extremely unkind to me. Since that time I discovered, he started having migraine, I wouldn’t wish this on anyone. (might I say Karma is a bitch) Had an affair with his office nurse, the other two doctors bailed on him, he is no longer working for that hospital system, he is now the doctor at our local Women’s Correctional Facility.
- My PCP at the time, I believe just didn’t know what to do with me anymore. And started getting rather snippy with me. He put a note in my patient chart saying, I was a “possible drug seeker”. While he was the one, who started giving me the shots of Demerol, which helped. If you’re getting something that helps your pain, wouldn’t you ask for it when your in pain again? Of course now I know that opioids are not the right treatment for migraine. I was forced to get a new doctor.
- An ER doctor told me it was my fault, that it took so much pain medication, to resolve my pain.
- The first six months after I went chronic where horrible. I lost my job, had also been diagnosed with fibromyalgia, when I asked my PCP if there was a medication to help with this. His reply was to take hot showers. (this was the PCP whom I had recently fired) I also had a totally hysterectomy, our best friends moved away and our oldest son moved out. I was in so much pain, with no help or hope on the horizon. I became extremely depressed, when I did make it out of bed, I would sit huddled in a chair. I began having suicidal thoughts. When I actually made a plan, that scared me to my toes! I called my doctor’s office right away. And voluntarily admitted myself to our local Mental Health hospital wing, this was the best thing I ever did for myself.
- I’ve had doctors tell me that I was too complicated for them. One Neurologist who practically killed me. By stopping all the medication that I was on, including a MAOI, which is supposed to be weaned off of and started three new ones. For the first week I thought I was going mad, my mood was all over the place. From extremely mad to crying over nothing. After six months he didn’t know what to do with me either, he started me on Ritalin as a hail Mary, his words. I tried a couple of doses of the Ritalin, they made me feel like my heart was going to jump out of my chest. He didn’t set up a return visit, after starting me on the Ritalin. Then dropped me as patient without notifying me. In the six months that I saw him I lost forty-five pounds, because I was unable to eat.
- My new PCP wouldn’t listen to me when I told him I was over medicated, evidently he, being the doctor, thought he knew more than I did, about the way I felt. He was totally wrong. He had put me on both, Vicodin and Duargesic Patch. I could barely function. I weaned my off of the Vicodin, got a new PCP who helped me wean off the Duragesic. I could finally see the world clearly, no more lost days or entire weeks. I did what was best for me.
- Recently while in the hospital, a doctor who was assisting with a procedure, told me that he would have a hard time, believing me if I told him my pain level was nine. Too many doctors don’t understand chronic pain patients and the way I and others deal with it.
Did you notice that all the stigma I faced was from doctors? Not one person in my family has ever made feel, less than a whole person or guilty if I’m unable to make it to a family function. They are the best! My son’s have always been supportive also. My husband has never made me feel like I am not a good wife. He will not allow me to talk about feeling guilty, he tells me I have nothing to feel guilty for.
Almost every one of these situations could have been handled better on my part, if I was more educated about migraine disease. It is my responsibility to educated myself. Then when faced with stigma such as these, I’m able to advocate for myself, speak up when I believe a doctor is doing something that is not correct. Like having all my medications stopped abruptly, especially the MAOI, or being started on Ritalin. In the case of being over medicated, I did advocate for myself, even if it meant finding a new doctor. The more I know about migraine disease, the more I can advocate for myself, and get a better treatment plan, by working with my current my doctor, which I’ve done since day one. By advocating for myself and other living with migraine disease, I’m sowing seeds of knowledge, hope, encouragement, caring, support and beating back stigma.
“If you have a voice, use it.
If you have legs, stand up.
If you have feet, step up.
If you have eachother, fight together.”
Live with hope,
*Stock picture: Storyblocks