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Do others doubt if you really suffer from migraine?

Has anyone else had a moment of frustration or other feelings where you did something that made others question if you'r really suffering from migraines? Any suggestions on healthy frustration releases and ways to replace the doubt my actions caused?

Today I got so frustrated with myself for forgetting yet another thing because of having migraine. Before I developed migraines and during times without a migraine I have an excellent memory and people always ask and rely on me to remember everything. For a second I forgot I had a migraine and I knocked on my head with my hand out of my frustration. I didn’t do it on purpose I just felt in that moment so exasperated with myself. A family member, who I am close to and has supported me more than others have, saw me do this. Now they are back to believing I don’t really have a migraine even though a million other moments speak to the contrary.

Now not only did I succeed in making my migraine much worse but my action has made someone close to me question my migraine validity. I regret having done this and wish I could go back and change that moment so that I did not knock my hand to my head out of frustration with myself and my migraine. Has anyone else had a moment of frustration or other feelings where you did something that made others question if you'r really suffering from migraines? Any suggestions on healthy frustration releases and ways to replace the doubt my actions caused or working to restore the relationship and support?

  1. Hello ,

    I'm so sorry to hear about this experience and how such a small action caused such a large ripple effect in your life. How incredibly frustrating and disheartening to experience.

    The first thing that comes to my mind is the fact that so few people with migraine disease truly understand that the condition is far more than a headache.

    Unfortunately, the responsibility to educate and raise awareness about migraine as a complex neurological disease often falls on our shoulders, as migraineurs. To that end, if you have the energy to do so, you might think about sending some links to the articles that resonate with you the most - those which illustrate the symptoms you experience- to your friends and family in order to help them understand what you experience - to prove that you are not alone - and that this is not "all in your head."

    There is a very common symptom of brain fog that occurs for people with migraine which makes focusing and concentration a challenge: https://migraine.com/blog/migraine-symptoms-brain-fog/. Forgetfulness is part of that symptom. Aphasia is another common symptom- which refers to the challenge of finding words, or experiencing slurred speech: https://migraine.com/blog/recognizing-my-own-aphasia/. I'm not sure if that's something you experience as well. You might skim through this list of symptoms to see what else resonates with you and then seek out articles on those topics: https://migraine.com/migraine-symptoms/

    Whatever the case, it may be useful to send along articles like these to help illuminate the challenges you are up against to those who love you. That is the approach I have used in my life. I have found that increasing awareness on the topic of migraine has led to an increase in support and understanding.

    I'm so glad you are a part of our community and that reached out to share some of your story. Thinking of you. Please stay in touch.

    1. Thanks for the advise to share articles. I started doing this not only with the family member I wrote about but with other family, friends, and my therapist.

  2. I've hesitated many times thinking "If I do this-or-that after telling someone I have a migraine, then it'll look like I don't"

    I've also worried about times where I misses an event for migraine, but felt better later in the day and was able to run an errand or go fo a walk. "If so-and-so sees me will they think I lied to get out of the event?"

    I've stayed home even when I felt better to avoid that potential scenario.

    My friends and family have all been great in knowing that migraine symptoms vary and that I'm still a person!

    Even in the midst of a migraine I may still do something "normal". Especially, if some medications are taking effect, but I am still symptomatic. For instance, if my zofran works, but my head is still throbbing and I'm having trouble thinking, the nausea relief and,brain fog may find me wandering in the kitchen looking for a snack. I still have a migraine. (Side note. I installed a super low watt bulb in the fridge just so that I can get to ginger, magnesium, etc during an attack).

    I'd suggest a frank, quick talk with the now-doubting family member. Something along the lines of "I'm so appreciate of your support in the past. Please understand that when I have a migraine it is hard to think and I might do something normal or that makes my migraine worse without being able to check myself. It'll be great to have your continued support. Thanks."

    I have such difficulting thinking during a migraine, that unless bedridden, I'll wander in idiotic circles doing pointless things (it's as if I have dementia) and I fail to remember what I need to do to help myself.

    With my doctor I developed a written migraine plan that I have given to friends and family. Now when I have a migraine attack all I have to do is say "migraine" or text the headache emoji and I have a few people who can make sure I don't drive or try to boil water for tea, keep track of my med schedule, or just remind me to lay down and stay calm.

    Migraine is so challenging to understand even when you have it. And I'd say impossible when you don't. Before my first migraine at 38, I really had no comprehension of what others were going through.

    Sharing articles or even memes that resonate with you can help your family understand.

    I wish you a speedy reconsilliation and understanding.

    1. Sorry I am only responding now, my migraine has become increasingly debilitating. Thank you for your response! It was very helpful in so many ways.

    2. Sorry to hear your migraine has increased in debilitation. I am glad my response was helpful. I wish you the best and as much relief as is possible. Hugs

  3. Sorry to hear your migraine has increased in debilitation. I am glad my response was helpful. I wish you the best and as much relief as is possible. Hugs

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