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Internalizing the Stigma of Migraine

The stigma of migraine and society’s perception of illness, as well as the internal voice that judges me during a migraine attack have all been swirling around in my mind lately. The topics came together in Internalizing the Stigma of Migraine, which quickly became my most popular post on Migraine.com. I’m both saddened by the number of people who identify with this experience and honored that I can give voice to the torrent of emotions that accompany migraine.

Here’s a short excerpt from Internalizing the Stigma of Migraine:

I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience.

8 Responses to Internalizing the Stigma of Migraine

  1. Julie says:

    I do agree with part of your post, that public perception and the stigma that Migraine Disease is not real is damaging to the Migraine Sufferer, and that Stigma still persists in the Medical Profession as proof that so many Migraine Patients are still under-treated as well as wrongly diagnosed. The perception by all is that we are drug seekers and lazy has got to stop. We need better education for the public and TV commercials stating a simple OTC remedy can cure your Migraines is dangerous and very misleading to those of us that suffer Chronic Migraine Disease. The misperception that Migraine is not neurological still persists in society and is trivialized making the patient feel more and more isolated and can add to Comorbid Conditions as Depression and can lead to sometimes tragic results. I do not agree that we Migraine Sufferers don’t believe the extent of our illness and the extent. We are all too aware of it and are madder than heck that it’s not being recognized and the medical care is not sufficient. I have yet to come across in my online support groups anyone that disbelieves their own illness and adds further to the Stigma-that is external by others that surround us: family, friends and co-workers. We berate ourselves when we cannot do the things we want to do and it severely limits our lives as Migraine is more than head pain. When we have to constantly cancel functions with family and loved ones we don’t berate ourselves because we don’t believe the illness itself or the extent of it, it’s because it has robbed our lives-taken control of our lives that we cannot grab back. We don’t doubt the extent and damage of our disease, we’re just madder than hell and sometimes the frustration we cannot control it leads to depression and isolation. But we don’t disprove our disease. We have to live it day after day and wish others who DON’T suffer can understand. We want the Stigma removed from non-sufferers-family, friends, co-workers and the Medical Profession. We don’t Stigmatize ourselves-I don’t believe that part. I’m sorry. I’ve chatted w/way too many CM patients and they don’t Stigmatize this horrible disease. They are in too much pain trying to find help and get support and understanding. To me that is not Stigmatizing oneself.
    Blessings to you for a low pain day.
    Julie, A daily CM sufferer (not a self-Stigmatized patient)

  2. Timothy Bauer says:

    To Julia:

    Ditto. Ditto. Ditto!!!!

    Long time migraine sufferer

    Timothy Bauer
    Reno, Nevada

  3. Timothy Bauer says:

    Sorry I meant the last post

    To Julie not Julia)

    Ditto, Ditto, Ditto!!!!

    Long time migraine sufferer

    Timothy Jude Bauer
    Reno, Nevada

  4. I absolutely did not mean that migraineurs stigmatize themselves, just that when we’re constantly fed negative messages (as come with the stigma), we tend to doubt the severity of our symptoms at certain times or blame ourselves for triggering a migraine. There’s no denying that we’re in massive pain and disabled during a severe migraine attack, the questions come more during a lower grade migraine, when we’re in the hangover phase, or when one is just coming on. It’s not that we don’t believe the extent of the illness, but even in the depth of it, it can be hard to fathom just how debilitating it is.

    Thanks for rallying in support of migraineurs. I agree that we’re frustrated and angry and in desperate need of support and effective treatment.

  5. Julie says:

    We usually hold off on medicating ourselves with our abortive meds due to the high cost and the prescription limitations put on how many we can get filled per month per the insurance and CDC imposes. The doctors have their hands tied for the most part on what they can and cannot prescribe us, for those doctors that know the extend of the pain. Many other doctors are so poorly educated and uncaring they give very poor care to a chronic migraine sufferer, which adds more to the patients suffering and stigmatization as a result of that.
    A lot of us who have suffered for years from this are sick and tired of being treated as second class citizens and are fighting mad over the whole mess, but in the meantime we have to budget our meds to make them last as many of us have more migraines per month than medication allotted to cover them all. So it’s being stuck between a rock and a hard place of what you “think” you can handle and what you can’t-usually as a result sometimes we medicate too late because we’re in such turmoil on what will happen the next day and the next for 28-31 days of the month, whatever month it falls on. when you get an RX for Imitrex pills the insurance only allows you 9 pills. If you can take 2 per migraine, then that only covers 4.5 migraines per month and if you have Chronic Migraine you have them at least 15 days or more per month. So the patient is basically screwed when it comes to medication.
    I don’t believe we doubt our severity. We are living w/a major medication shortage at our disposal and in dire need of better medical care, less restrictions on prescribing pain meds and then we won’t wait so long to take our abortives and back up pills. Then too you have to worry that you don’t run into MOH which means you can only medicate no more than 3x a week at most. So one has to decide then too is this migraine worth expending the expensive and stingy prescription allotment for the month, or do I wait and see how it will evolve??
    So It comes down to medical care and the insurance companies, and others that don’t suffer chronic migraine that add to the stigma. Those who have never had one cannot wrap their heads around the concept of the pain because on the outside we don’t look “that sick” so therefore in their minds we are not. And then you have commercials on TV for an OTC medicine that claims to knock a migraine down in it’s tracks when its so far from the truth, further lending to the stigma and how others perceive us. They think we should just take an OTC standard aspirin and be done with it. That’s not the case for a true chronic migraine sufferer. If we could get relief from a thing like that we’d have no trouble popping them and be on our merry way.
    Thank you for letting me voice my opinion. And thank you Timothy Jude Bauer for your support. Blessings to you all for a low pain day.

  6. Great points, Julie. I’m with you 99%. 🙂 Maybe my mistake was in trying to speak for other migraineurs, though I don’t profess to speak for all of us. I and so many migraineurs I’ve met doubt the severity of our illness at some point. It’s wonderful that you and others you know don’t — I wish I were able to validate my experience in the same way you all can.

    Thanks again for sharing your perspective. I appreciate seeing another point of view on this.

    Kerrie

  7. Timothy Bauer says:

    Julie:

    Once again you hit it right on the head.
    For my treximet-the insurance only allowed 9 pills a month.
    As you indicated what to do if have more than 9 migraines
    a month-which is what I and other migraneurs have.

    Well have had to resort to cutting my pill in half. Even
    though it says not to do that in the directions. Have had to
    do this for several years. That means that probably am not
    getting the optimum dosage for my migraine. But that
    for me beats the alternative-not having any triptan when
    get a migraine. Not good options Julie.

    What I try to do now-is to ask for samples (any type triptan)
    from my neurologist. Many times have been able to booster
    my supplies of meds that way.

    But as you said Julie-“So the patient is basically screwed
    when it comes to medication”. I have even checked on the
    overseas pharmacies and have never seen that they sell
    triptans-maybe because they are very expensive. I asked
    my pharmacist one time what 9 pills of Treximet would
    cost out of pocket-he quoted me over $300.00. That is
    around $35 a pil!!!

    Hang in there Julie!!!

    Timothy from Reno

    P.S. If anyone is interested am soon going to probably
    enter in a clinical trial for ACTH. I am one of about 30
    persons across the U.S. who may be enrolled. If anyone
    is interested in whether ACTH reduces my migraines
    will keep them informed.

    http://clinicaltrials.gov/show/NCT01813591

  8. Julie says:

    Hang in there Timothy and stand your ground. I pray your trial works out for you and hopefully some day soon we can see the stigma others place on us Chronic Migraine Sufferers lifted and we have the understanding we need. But most of all that the medical profession and CDC gets us better care and better medication options and the insurance companies don’t rule our lives anymore by limiting our abortive mediations that we have to fight tooth and nail anymore. It’s sad when you have to try to budget your meds vs. your pain level as to what is allotted for you for the month. Everyone knows Chronic Migraine has a MINIMUM of 15 days per month and only allowing 9 pills is plain retarded and makes no sense at all. Prayers to you Timothy. We can lend a voice to others in our exact same predicament.

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