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I’ve had headaches my entire life but they were not considered chronic until just two years ago (when they were daily and turned into migraines). That is when I started to experience the stigma related to headaches and migraines. Whether well-meaning or not, I’ve found some people’s comments about headaches/migraines to be hurtful, invalidating, ignorant, and just plain annoying. Here are some tips for family and friends (and even others with Chronic Pain) on how to communicate your concern appropriately with someone who has a migraine or headache disorder.

Comments Reality Alternative
Why didn’t these headaches bother you before? Chances are that the headaches probably bothered the person before, but it’s likely that they just didn’t talk about them until they started to interfere significantly with their life. “I’ve noticed that your headaches have seem to have gotten worse over time. If this is something you’d like to talk about I’m here to listen and I’d like to learn more.”
You have another headache? This comment may come out of your own frustration and feelings of helplessness. Please be aware that the person that lives with chronic headaches and migraines is probably just as frustrated. People with headache disorders and migraines usually have a chronic condition that requires daily tools to use for maintenance and management of symptoms. Use an “I” statement to share your feelings and reactions to the situation. For example, if this is the fifth time your friend cancels on you for coffee, you could say “I don’t understand what you’re going through. However I want to let you know you’re important to me and I do want to spend time with you. I also want you to take care of yourself and I understand that you’re doing the best that you can. Just let me know when you want to reschedule.”
Maybe you should try to do this or that, because I know that helped so-and-so with their headaches and migraines. This can easily slip out. I know because I’ve actually done it to others with headache and migraine disorders and I actually have them myself! While certain treatments and approaches may work for one person, they may backfire and cause more damage for another. More than likely, the person dealing with the chronic head pain is working with their team of specialists to try and find some relief. Each person is on their our own journey and they will find the tools that work for them.  “I don’t know all of the things that you’ve tried for your pain management, but I’ve heard some things about some other treatment options. If you’re interested in discussing them just let me know.” End of conversation.
Maybe you just need to learn better ways to cope with stress. I can guarantee that this statement will create a stress response and probably a headache too. Whether the person suffering from headaches and migraines needs some new stress management tools, telling them they can’t cope with stress is not going to help the situation. Try asking if they’ve seen a pattern of certain stressful situations increasing their head pain. “What do you do currently to manage your stress?” “Would you be interested in trying XYZ (yoga, pilates, humor therapy) with me? I could always use some good stress relief!”

 

Pain Camp is a safe place to share your thoughts, experience, strength and hope.  Have you ever said anything like this to a person with a headache or migraine disorder? How was the comment received? Have you learned any other good ideas about how to communicate your concerns? 

9 Comments

  • Aaron February 1, 2013 at 10:47 pm

    Its very easy to want to prescribe or offer suggestions when someone is hurting or suffering and you feel like you have a solution. I don’t know if this is just a male problem to want to “fix” it but sometimes the best thing is just to acknowledge and validate then offer your support. Not easy though for some reason.

    Reply

    • camperjen February 12, 2013 at 7:17 pm

      Thank you Aaron for offering your perspective as wanting to “fix” things. You have a great point about just acknowledging, validating and offering support. That’s what those of us with invisible illnesses need!

      Reply

  • February 2013 Headache & Migraine Carnival: Migraine Pet Peeves | Pain Camp February 12, 2013 at 2:02 am

    […] Pain Camp participated in the Headache & Migraine Disease Blog Carnival at Somebody Heal Me this month! Our post that was featured: How to Avoid Making Hurtful Comments to Anyone With a Headache or Migraine Disorder. […]

    Reply

  • Julie February 12, 2013 at 5:48 pm

    I enjoyed reading your post. It is very well written and easy to follow and has very good tips. I have found that I am guilty also of “Maybe you should try this or that” but not with Migraines because I know how complex they are and that each person based on their own neurological and chemical responses have been working hard with their health care team and have tried and are still in the process of trying all that there is-traditional and alternative. But I have come across a friend or two that has symptoms of my newly diagnosed FM/CFS and they have been struggling for years w/their symptoms w/no answers and I got mine on “Migraine.com” through blog discussions. I really think posts like these and online support groups like “Somebody Heal Me” and “Migraine.com” are essential in a Migrainer’s daily struggle and help with coping skills as they see all the different coping mechanisms and to know they are not alone!
    I have tried to educate family and friends, and once former co-workers until I was blue in the face to no avail. I have just come to the fact that until they themselves actually experience a migraine themselves they just won’t “get it” and that is a sad fact and that is what makes living with Migraine Stigma all the more stressful and debilitating.
    Thanks again for such a great post. I’m keeping it bookmarked 🙂

    Reply

    • camperjen February 12, 2013 at 7:23 pm

      Thanks for your comment Julie. Isn’t it awesome that there is so much online support! I too get frustrated with the stigma, and I think that is another place that the online education can be helpful. Welcome to Pain Camp and we hope to keep seeing you around! 🙂

      Reply

  • Julie February 12, 2013 at 5:52 pm

    I really like this post. It is well written and very informative-has really good key points as well as good alternatives. I wish I could teach my family and friends how to use them, LOL. Oh well, it just goes to prove that until they actually experience a migraine themselves they just will never really “get it”. Keep up the great writing and I will keep checking back 🙂

    Reply

    • camperjen February 12, 2013 at 7:16 pm

      Thank you Julie! I agree and think it may be the human experience that we can never truly understand what someone else is going through unless we are them. We look forward to you coming back! 🙂

      Reply

  • Erika March 12, 2013 at 6:03 pm

    Personally, for me, suffering from migraines causes guilt.

    I feel guilty that people think I’m over exaggerating the pain and symptoms, and their consequences on my life.

    I feel guilty because it means I either can’t work or am less effective at my job.

    And it makes me feel guilty because I feel like my suffering negatively affects those around me (friends or family are left hanging and coworkers are left with the burden of extra work).

    I’m sure others who have migraines can relate, though it’s not often discussed or even recognized as a “symptom”. How have you coped with the guilt of suffering from migraines?

    Reply

    • camperjen March 18, 2013 at 7:43 pm

      Thank you Camper Erika! Sorry for the delayed reply, but the comment ended up in our Spam folder! 🙁 It is anything BUT that! You share a great point here re: guilt. I’ve had to work a lot on acceptance of what are the things that I CAN change (the Serenity Prayer) and acceptance of the things that I can’t change. There are still days when I feel a bit of guilt on occasion, but knowing and accepting that I’m doing the best that I can with the tools that I’ve been given are what keeps me out of that guilt trip. 🙂 Peace and Blessings!

      Reply

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