Chronic Migraine Awareness, Inc. would like to thank Roni A.Jones for her contribution to our blog.

“Stigma is a process by which the reaction of others spoils normal identity.”

Quote ~ Erving Goffman

In the last few years, I haven’t encountered much stigma, and to be fair, I don’t work outside the home. Due to the high levels of head pain and other migraine symptoms, I don’t even leave my house very much. But when I stopped and thought about it, I encountered a boatload of stigma, when my migraine changed 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 halting the Propranolol, I entered Chronic Daily Migraine hell, where I 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 situations where stigma played a big part, and I just wasn’t aware of it at the time.

  1. 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, and they should have been concerned, caring, and compassionate for a co-worker who was so ill. None of that happened. They tried to fire me while I was in the hospital. Human Resources told them that they couldn’t do this.  They devised another plan and had it all in place the day I came back to work. My orders were to report to the Office Manager at the end of the day and give her an accounting of the tasks I had completed that day. They couldn’t fire me due to my illness, but they could fire me if I were 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. They fired me because of this; I was devastated. A small side note: One of the doctors was extremely unkind to me. Since then I discovered, he started having migraine; I wouldn’t wish on anyone. But might I say, Karma is a bitch.
  2. My PCP at the time, I believe, didn’t know what to do with me anymore. 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 you’re 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.
  3. An ER doctor told me it was my fault that it took so much pain medication to resolve my pain. As a side note, I never go to the ER for a migraine attack any longer. The treatment plans my headache specialist and I have worked together on, gives me the tools I need to avoid the ER. 
  4. The first six months after I went chronic where horrible. I lost my job and was diagnosed with fibromyalgia three months later. When I asked my PCP if there was medication or treatment to help with fibromyalgia, his reply was to take hot showers. (this was the PCP whom I ended up firing) I also had a total 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 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.
  5. I’ve had doctors tell me that I was too complicated for them. One neurologist practically killed me by stopping all the medication that I was on, including an MAOI (which is supposed to be weaned off of) and started three new ones. For the first week, I thought I was going mad, and 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 a patient without notifying me. In the six months that I saw him, I lost forty-five pounds, because I was unable to eat.
  6. My new PCP wouldn’t listen to me when I told him I was over-medicated; he being the doctor, thought he knew more than I did, about the way I felt. He was wrong. He had put me on both Vicodin and Duragesic Patch. I could barely function. I weaned myself 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.
  7. 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 healthcare providers? 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 sons 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. I didn’t ask for a life with chronic migraine. 

Almost every one of these situations could have been handled better on my part if I’d educated myself more about migraine disease – it is my responsibility. 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 doctor, which I’ve done since day one. By advocating for myself and others 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 each other, fight together.”

Quote ― Janna Cachola 

Written by; Roni A. Jones

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