It’s MY migraine

It’s MY migraine

I don’t know if this is the case with other chronic illnesses, but I’ve noticed that migraineurs tend to take personal ownership of their migraine experience. How many times do we say, “MY migraine always…” even when talking to other migraineurs? Perhaps it’s because there are infinite ways in which migraine can present. None of our stories are exactly the same. None of the available treatments produce the same response in every one of us. Yet I wonder if there is something more.

Migraine is heavily stigmatized. We face skepticism, criticism, ableism, and any number of other –isms. Being told to “take a pill” or hearing “I get headaches, too, but…” reminds us that most people really don’t believe us. The constant pressure (subtle or not) to prove the legitimacy of our illness is exhausting. In the darkest of times, migraine itself may become the only thing we can actually rely on. It may torment us, but at least it’s still around. Taking migraine personally is a given. So without even thinking about it, we start saying, “MY migraine.” It’s the only thing that is uniquely ours. Saying “MY migraine” challenges others to defy OUR perception of OUR reality.

I come from a CAM background, including the practices of meditation, mindfulness, and positive thinking. From that perspective, many patients are advised not to identify too closely with their health condition. The idea is that by owning the illness (i.e. “MY migraine”) we give it power over us and create mental and spiritual obstacles to healing. Some go so far as to say that people who own their illness don’t really want to get better. The suggestions include:

  • Stop talking about your illness
  • Stop others from talking about your illness
  • If you must say something, avoid the word “my” at all costs
  • Use temporary, positive language that expresses the expectation of healing

Hogwash! I don’t believe that for a minute. To speak in such terms about a chronic illness is delusional. Migraine can be a significant part of life even when well-managed…and it doesn’t have a cure. I’m all for having a good attitude and trying to improve quality of life, but that sort of advice trivializes the severity of migraine.

So, here’s to all those well-meaning souls who sincerely believe that I am not MY migraine. I have just one question for you. I’ve tried it your way – ignoring reality and pretending I’m perfectly healthy. I just got sicker. How can you possibly suggest that I deny the existence of something that has been a part of my entire life? No, thank you. It’s MY migraine and I’ll talk about it if I want to.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (17)
  • Brenda19
    3 years ago

    I so wish the people around me would take more serious. I also am bipolar and they do seem to think that is a big deal either. I suffer everyday just like all of you and the Dr’s do not help. I too feel like a lab rat. Non of it helps, and who cares but us.

  • Brenda19
    3 years ago

    Hi Tammy, I so agree with you. People and all the Dr’s I have seen so far(moved to a new state) do not believe me. I too have suffered from them since my teens. Like today another search for a Dr. Ignore them, I would like them to try it sometime.

  • Tammy Rome author
    3 years ago

    Brenda19,

    Have you see a headache specialist? They’re a lot different than a primary care doc or a neurologist. Take a look a this: https://migraine.com/blog/how-are-migraine-specialists-different/

    Tammy

  • Crystalrz4
    3 years ago

    AMEN, SISTER!!!

  • bluebird
    3 years ago

    “Hogwash”! Delusional!
    My migraines first presented as colic when I was an infant. Abdominal migraines emerged in youth, and confusing experiences now understood as brain fog etc hampered professional education. Decades later, after I had a viral meningitis, my symptoms became so severe I was unable to continue doing the work for which I had studied so many years and sacrificed so much to be able to do.
    As symptoms kept changing, the diagnosis changed too. Vestibular migraine, hemiplegic migraine, brainstem migraine with aura…
    Through all of the (ugh) evaluations, it always seemed I was presenting unique and confounding experiences.
    I felt so alone.
    As unique as my evolving migraine syndrome has been, it is SO reassuring to have this forum to remind me that I am not alone…Not alone in the searching for everything & anything I can do or not do, or to take responsibility for, in order to make my life more “ordinary”.

    I don’t want the specialness of migraine. and I don’t want anyone’s judgment that I am making myself sick. I don’t want an inner judge or someone else’s.
    Yes, this is my journey, one I would give up in an instant if I could have a healthier experience. Ultimately, I am not my illness… but I do have to live with it.

    Acceptance requires my own clarity that I have done the best I can for myself and my family, that I have tried everything… And my courage to be clear with others that their conviction that they know better is not helpful…even with the best of intentions and conviction that their truth is “truthier” than my own.

    Being real and truthful may bring a positive attitude and practice…but being real includes more.

  • Diane1010
    3 years ago

    I wanted to add. Everyone’s migraines seem different. As does their lifestyles.

    Don’t take this the wrong way, but it is so nice having a fellow migraineur as a neighbor. She gets it. Her condition and lifestyle are so different , I honestly don’t know how she manages. But I think having someone to commiserate with is very helpful. I know it is for me.

  • Diane1010
    3 years ago

    Great article. I’m all for a button.

    I’m sick and tired of being a sick and tired lab rat. I’m all for trying new things to manage my condition. But this doesn’t include incorporating other people’s delusions into MY reality.

  • Sylvia Reed
    3 years ago

    Thank you for your article. I have had these migraine/cluster headaches for most of my life (i am 77),and they have been chronic for many years. Not only do I put up with the pain and other symptoms, most people do not understand. I have had so many people tell me not to identify with them. I have tried most things including meditation and many similar things. When they do not make the headaches stop, there are too many people who try to make me feel guilty because of my incorrect thinking, etc. That has made me feel like a failure which just adds to my pain. I guess they are entitled to their opinions because they are based in ignorance!

  • Holly H.
    3 years ago

    Sounds like just another shade of that “if-then” color that is painted with a wide brush over folks that have invisible chronic illness — that IF we would just ____, THEN our migraine disorders would just go away. Which implies (or some have just come out and said) that since we haven’t said or done as per the opinion being presented, “then” it’s our own fault we suffer as we do. So very disheartening.

    After several years of 24/7 migraine with aura, with the addition of two more types of chronic migraine diagnosed in the last two years, I cannot even remember how it felt without migraine. Facing the reality of my particular chronic migraine disorder is the way I have had to gain insight to help cope in any way I can.

  • BethBlue
    3 years ago

    This is what happened to me the other day: I went to my primary care physician for a referral concerning a gastrointestinal issue (damned Topomax). I was assigned a new NP for my care, and as the discussion progressed, the topic of migraines came up. She mentioned that she also experienced chronic migraines. I didn’t say anything. Why? Because I honestly didn’t care. I was there to care about ME. And truthfully, when I hear someone else say that they also suffer from chronic migraines, I tend to skew on the side of skepticism. I immediately think, “Really? Do you honestly go through the type of symptoms that I experience? I highly doubt it. Because if you did, you would be sitting in my place, and not standing in YOUR place.” And I don’t think I’m wrong to feel this way, either — cynical, but not wrong. Anyone else?

  • BethBlue
    3 years ago

    Luna, I apologize for not having seen your comment until now. I “skew” that way because, with one exception, I’ve never heard another person’s experience or treatment story sound anything like mine. I’m not trying to play “can you top this?” with others — far from it. I’m just pointing out that it’s daunting to share your health experience story with someone only to have them parrot something back to you that rings so hollow. I appreciate that others care and sympathize; I’m not trying to trivialize that. That’s why I prefer to keep my health condition to myself to avoid the whole thing — it’s just easier, all the way around. But now that I’m applying for disability, I have to surface above the radar and draw attention to myself, and that’s difficult for me.

  • Luna
    3 years ago

    “when I hear someone else say that they also suffer from chronic migraines, I tend to skew on the side of skepticism.”
    I can understand you not wanting to talk about someone’s migraine but yours at an appointment. Don’t waste precious time. But I hope I’m not hearing you say you doubt other migraine experiences just because it doesn’t match yours.

  • LadyJ856
    3 years ago

    I loved when you said “Hogwash!” Sometimes even those who do have migraines but only have a few a year don’t understand those of us who live with them on a weekly or daily basis.

  • bluebird
    3 years ago

    yes

  • Mr FBP
    3 years ago

    100% agree with you. I take ownership of my migraine as dealing with it is my job. Doctors, forums, family, friends and fellow sufferes can help, but ulitimately it’s my illness.
    The other reason for talking about MY migraine is that my solutions and treatments are personal to me.
    Most of us have experience of being TOLD how to cure our migraine by people, but everyone has a different experience. So when taking to other migraineurs about what works we can only say “This works for me” rather than “You must do this to get better”
    Here in the UK writer/comedian Stephen Fry produced a TV show called “the Secret Life of the Manic Depressive”. As part of the program he asked many sufferers of Bipolar Disorder “If their was a magic button to press to make your condition disappear, would you press it” Surprisingly only one person said yes. This may be behind the CAM advice you describe – letting your illness become your identity to the point you won’t let go.
    I can assure you that if there was a magic button to cure MY migraine I would be press it most enthusiastically.

  • Sylvia Reed
    3 years ago

    I’d press it in a hot second!

  • LadyJ856
    3 years ago

    Yes! Yes! Where is the button?

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