Coping Skills: Save the Judgement-What Matters is Finding What Works for You

Most of us who have learned to live with hope and joy most of the time despite living with severe migraine disease (yes, even chronic migraine, which is defined as 15 or more headache days a month) have had to learn that there is no one magic bullet that will fix your migraine disease. Utilizing a wide variety of techniques and treatments is essential. Even some things that may sound crazy at first blush. And you may not believe me right now, but keep reading and entertain what I have to say before you get upset: Your attitude matters. It’s not going to heal your migraines, no, but it will change the relationship you have with them.

Traditional Western medicine is wonderful for so many things. But it’s not always a good fit for management of chronic pain conditions like chronic migraine. One of the worst days of my chronic migraine journey was when a narrow minded doctor sat me down and said I’d have to learn to live with the situation until we found a medication that was effective in preventing my migraine attacks. Those of you who already know my story know that meant frequent debilitating chronic migraine attacks that were destroying my career, relationships with family and friends and stealing my personality. My husband was livid, and I cried all the way home. I’d let that ignornant doctor steal my hope, and it took a lot of searching before I started to find bits and pieces of hope in the form of out-of-the-box treatments and alternative therapies.

The other day I did a count of the medications I’ve tried for migraine and came up with 49. Forty-nine medications in nine years. And not one of them prevented my migraine attacks on any measurable level. Fortunately, when you get really desperate, you’re willing to try just about anything, which changed everything for me.

I took control of my need for better treatment providers by traveling to see an out-of-town migraine specialist. I started psychotherapy with an excellent therapist and promised my family I’d stick with it for at least six months. And I attended a six week intensive outpatient program where I learned life changing information about how to cope with my situation and not be consumed by suffering. The program focuses on functional physical therapy, biofeedback, counseling, nutrition and anything else an individual patient needs to address to live as well as possible despite chronic illness. I read as much as I could get my hands on about how to live well with chronic pain and chronic illness.

Everyone who knows me in real life sees the change in me. At first they always ask if my migraines are better, thinking the only way I could have had this kind of change in attitude is if I was better physically. I’m not. I still have chronic migraine disease. They are often surprised when I tell them the shift is all attributable to my relationship with my disease.

I was angry as hell about the situation I found myself in as a result of my chronic migraine disease. I lost a career I loved, friendships I cared about, my independence and my health. I had to grieve those losses to get to the place I’m in now. I used to read suggestions from other people with migraine who were further along in the grieving process than I was and dismiss their assertions with a nasty claim they couldn’t possible understand what I was experiencing. So don’t worry if you’re still in that angry place. Just be honest with yourself about whether you’re directing your anger toward people who may not deserve your nastiness. It’s a process, but your family, friends and other migraineurs don’t deserve your ire.

For me the keys to changing my relationship with my migraine disease have been helping other migraineurs, blogging, meditation, therapy, hobbies, strong online friendships, medication (including treatment meds and both long- and short-acting narcotics) and having a strong plan in place for how I’ll spend my time. For other people it might be Topamax, prayer, crystal therapy, shining it on during tough moments or any of a thousand other things. What’s important is that you find coping skills that are meaningful and helpful to you. Not whether you approve of anyone else’s coping skills.

What helps you cope with living with migraine disease? Please share in the comments!

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)
  • body
    6 years ago

    Hi Diana,
    I love your attitude and appreciate the fact that you, Teri, and many others who contribute to this blog attempt to instill hope, rather than despair, to those of us who suffer from migraine disease. The realization that we are all unique in our suffering and our responses to medications and other therapies encourages the belief that we can manage our disease in our own way and be successful.

  • Diana-Lee author
    6 years ago

    Thanks, Sharron! It’s always a work in progress, but my life is much better since my attitude shift, even though I still have many bad migraine days.

  • terib
    6 years ago

    Loved this blog.. I haves suffered chronic migraines for 10the yrs since I got a diagnosis to of lyme Disease .. it for a while to took over my life .. only in the last 2time years have I begun to take back my life .. it does take so much strength to do so .. this is so hard yo do and so many people just do not understand what this kind of pain is for a person .. and what it takes to overcome it .. thank you for this blog so glad I came across it .. I was just introduces to biofeedback going to start is soon looking forward to it .. amazing how ling it takes to fight with primary care to get the right care for chronic illness .. but finally I am on the road to managing it rather than it managing me .. that is the key .. to all who suffer any chronic illness find the right care advocate for what you need get a new dr till you get someone who will work with you .. no matter what ut takes you are worth it ..

  • Ellen Schnakenberg
    6 years ago

    terib – Thank you for your story, and good luck continuing your care. It sounds like congratulations are in order as you are finally on the right road it seems. Yay!

  • Nancy Harris Bonk moderator
    6 years ago

    Nicely said Diana. I’ve said this before, and will most folks probably don’t like it, but anyone who has a chronic illness, like migraine, needs to see a therapist to learn how to cope with it. A good friend once said who is a nine year cancer survivor, she would rather have cancer than a chronic illness. Because when you have cancer you know there is one of two outcomes; you get better or you don’t, it ends one way or the other. Chronic illness is unending.

  • Julie
    6 years ago

    That is what my therapist said. I’ve been seeing her since late 2010. She’s been a major help. And even with my breakdown this past Aug when I was hospitalized w/major depression. I was at my breaking point. That is when my major therapy began. Sad to say that hospitalization was the worst thing but aslo the best that ever happended to me. There I learned better coping skills for my depression, PTSD and pain management coping skills. This continued w/my regular therapist after my hospital stay. But listen to Nancy and get help now and don’t get so depressed over the pain and other things until they spiral out of control and you get so messed up like I did and you start thinking of ending it like I did. I was that messed up. Now I’m on the right track, Thank God, and if it wasn’t for my best friend, my therapist and the great staff at the hospital who knows where I’d be today. But pain and guilt and anguish if you don’t know how and can’t control it can take you to some pretty dark places that you just don’t want to even think of going to. Trust me.

  • georgiaslesinger
    6 years ago

    I suffer with chronic basilar-type migraine, with all the lovely symptoms, which include: extremely painful headache, scintillating scotoma, diahrea, vomiting, Migraine-associated vertigo, faintness, aphasia, depression, night terrors, olefactory and auditory hallucinations and my very favorite, AIWS.

    I never judge anyone’s methods of coping with chronic migraine. But I find I am judged quite often for NOT taking powerful meds with serious and sometimes life-threatening side effects. I have been offered all of them by different doctors, including opiates, which I won’t take because there is a history of addiction in my family.

    So, coping, for me is a spiritual and philosophical journey. Diana, I’m sure a lot more people think I’m nuts than think you’re nuts, lol! I use color therapy, crystals, prayer, and meditation. Sometimes I just “slog through the fog” and on the days when that’s too hard to do, I allow myself to cry. I also forgive any angry feelings I may have at the situation or at people who don’t or won’t understand what I go through. Forgiveness and acceptance and the strongest medications I have in my arsenal.

    But the best one for me is laughing at myself. A sense of humor get’s me through more often than not. I was at a wedding recently when the migraine fairy came to visit and I almost fell out of my chair. In trying to make my way to the ladies room, I lost my balance, spun around a little bit and almost fell off my shoes. Several people turned toward me and gave me strange looks, so I looked right back at them, grinned and said, “Yep. Drunk again!” (I don’t drink).

    Luckily, my husband is supportive and understanding for the most part and I appreciate his sense of humor as well. The family(kids and grandkids) were visiting one day and we were all sitting and talking and I had a migraine. One of them asked me a question and I answered them in some kind of Martian(aphasia). They were all staring at me quizzically until my husband translated what I had meant to say. Then he smiled proudly and said, “I am fluent in migraine.”

    My oldest daughter has always wondered why I bother with doing my hair and make-up every day and says, “Mom, why do you do that? People don’t realize how sick you are.” But, that’s fine with me because it also helps me to to feel less sick if I can stick to my routine as much as possible, work as much as I can and to enjoy life in spite of the migraines.

    The judgments of other people don’t mean anything to me anymore and my own judgments mean even less:) Migraine disease is what it is, but I refuse to let it inform my life.

  • Julie
    6 years ago

    I don’t think your nuts. I’m so sorry you have to suffer so. You are so lucky to have the support of your husband. You have such a healthy outlook that you don’t let the attitude of others bother you! You are amazing! I will keep you in my prayers. Bless you.

  • arden
    6 years ago

    Spiraling down the vortex of pain after the crying is done and the shouting out is useless, deeper into the place where no one can reach you any more and its just too much to endure – again- I finally reach for the waiting hand that is always there and He walks me through the darkness helping me to bear it, just bear it one more time.

  • Julie
    6 years ago

    Good for you Diana. I’m so happy your in a more peaceful place where you can deal more peacefully with this incurable chronic invisible illness. It’s taken me years to get to the place I am now where I can let family, extended family and friends comments and expectations roll off my back and not let it bother me to the point it use to. This site and you as well as Teri, Ellen and all of the countless other fellow sufferers have been such a major help and support that you have played such a major role in allowing me to vent when I needed to and letting me know I really am not alone in this fight for the long haul. I have found it so theraputic to blog online and chat online with my fellow ICI sufferers and we all look out and support eachother. And all the helpful advice we get is worth trying and 95% of the time it works and the other 5% you wouldn’t have known had you not tried. But Chatting with all of you and my therapist got me into journaling, then blogging which I never tried before, then my 1st online Migraine chat ever. I can express myself freely and yes it is theraputic. I’m more into my meditation now, more mindful of when my migraines are coming on and trying to abort them and trying to be more proactive again because guess what, I’m the only one responsible for my wellbeing so I need to be as proactive in my migraine care as possible. And if I hear anything negative at home I don’t let it trigger me like before. We can’t compare to anyone-we are all different as our meds are different. But mindful meditation and focus when you can does help-to a degree. It doesn’t stop the debilitating pain, but you can deal with it better and not be such a whiner about it and throw a major pity party. Sure I’d be happier if it would be gone. Who wouldn’t. But for some reason, from a higher power if you belive in that or not, we have been given this cross to bear and how we deal with it is how heavy the burden becomes or if we shift it a different direction it becomes a little easier to bear. I totally agree with you Diana. How you look at it, how you deal with it and how you cope with it does make a difference. People do make judgements and if they don’t agree those are usually the ones that would be unhappy that would disagree if you said how pretty the blue sky was. They would say something like “well, it would be if there were not so many clouds in the way”. Ignore the naysayers. I’m surrounded by them and I will not let them bring me down!! No way Jose! Next time I hear “you got a migraine, again!” I will say “you bet your bippy, time for a reset” or if a freind says “you don’t sound or look that sick”, I no longer roll my eyes or sigh I just say “well, the undertaker needs a break today” and just turn away. Dark humor makes them do a double check and rethink. Always keep them thinking I say. LOL

  • Julie
    6 years ago

    MJ, feel free to use them and if you have any to add please pass them on 🙂

  • 6 years ago

    Julie, I like your dark humor retorts. If you don’t mind, I just might borrow them. Like you said, it makes them rethink, which is what’s needed sometimes to shake them awake to the thoughtlessness of the comments they just threw out.

  • CathyC
    6 years ago

    Not allowing my “in a funk” to last too long. Although sometimes when they happen, after too many in a row and I feel so defeated. I need to allow myself that time to be down, as it’s healing. I do a lot of reading and quiet things. I pray and listen. I love what MJ says about “forgiving myself when I can’t do something due to my migraine”. I so agree and not comparing mine to anyone else’s. Sort of like surgery recoup time, they are all different. The down time re energizes me to be my normally positive self who always looks on the bright side.

  • 6 years ago

    Being around people who make me laugh; taking long, hot baths; honoring my physical limitations; commiserating with my fellow migraineurs; daily walks; gardening; naps; eating healthily; daily preventive meds and supplements; abortive meds when needed; forgiving myself when I can’t do something due to migraine.

  • Myth1977
    6 years ago

    That was always my largest battle… you get all these medications and little else and then you are expected to maintain fulltime work… waiting for these things to work, putting up with side effects, having them changed on you again. It seemed no matter what they did at the very best my migraines were chronic and at the worst daily, but the best could never ever be maintained for long. It seemed at most two years before whatever it was failed to be effective. Because it isn’t all the meds. If the pain is getting to me I don’t sleep, if I don’t sleep I’m in more pain, if I get more migraines, I miss more work, if I miss more work, my employer gets horrific. And then i would just struggle to hold on. Then I couldn’t and would end up on a short term leave. Rinse. Repeat. Until I realized this would continue forever, that no med was going to do anything, that no doctor was going to care that I couldn’t survive work and that led to an unfortunate attempt on my life. And I’m still struggling with the work situation. But I came to the same realization you did. While I had tried an infinite amount of things before… too long to name… I had never really made a distinction between pain and suffering. And doing things actively just to reduce suffering. Just acknowleding that simple basic fact that I may have chronic migraines forever, or a very long time, and medication can at best bring them down to 15 a month or reduce intensity (and that is Good) And from there reducing my suffering in any way possible is a job well done on my part. I clearly had this ‘push through the pain’ approach because ‘I gotta do what I gotta do’ that wasn’t working for me. And I clearly needed a fresh batch of coping skills. So I sought out a psychologist as well to pick up a new bag of tricks to mix with my existing ones. Sometimes it isn’t just about surviving the pain… cause I get locked in those horrible surival mode at work that is literally my worst nightmare. It is wanting to survive and to do that we have to figure out the distinction between pain and suffering. I’m not saying we can eliminate suffering, because that is literally impossible but that we can make it significantly worse or significantly better. It would help if doctors were not such idiots about medications… but that is apparently asking for way too much. Anyway… these are the lessons I like to learn the real hard way and am still learning over and over again.

  • terib
    6 years ago

    I do agree with you there the drs just because they have a phd doesn’t mean they are the end all be all yo everything I have learned that the hard way .. after a 10 year battle in this game finally starting to learn to keep my head above water level and have more good days than bad .. I know I will live with it forever but it wont beat me like it once did .. I have tools in my tool box now and adding more everyday .. thanks for all the blogs in the net that share and support those of us with chronic illness if we don’t help each other we would never get anywhere .. drs want to keep us dependent on them so we keep them paid I am not into that game .. I want off that treadmill ..

  • georgiaslesinger
    6 years ago

    So, true, Myth:) Pain is inevitable in this life, but suffering is optional. Realizing that is half the battle:) Blessings!

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