Kimberly's Struggle to Get Loved Ones to Understand Migraine
Last updated: February 2023
The Editorial Team at Migraine.com is highlighting people in the migraine and headache disorder community in a series of interviews. We talked to Kimberly, who shares the difficulties in getting loved ones to understand the invisible disease.
Kimberly's migraine story
My personal experience with migraine started after a car accident where I got a concussion, post-traumatic headaches, and then finally migraine. Medications helped, and I was migraine-free after that, until mid-year 2018 when they came roaring back while I was pregnant, and then again they went completely away. A few months later, in January of 2019, I felt a lightning bolt of severe pain accompanied by vision problems. January 27, 2019, will always remind me of when my journey really began.
The list of treatments goes on and on...
I have tried holistic treatments, physical therapy, vision therapy, vestibular therapy, craniosacral therapy, Botox, nerve blocks, IV infusions, ER trips, and the list goes on. I believe that there will be a point in time where the frequency and severity of migraine attacks lessen drastically!
I am taking back control
I turned to spreading awareness about migraine rather than just grieving the life I once had. I am a member of a few support groups related to migraine as well as advocacy. I volunteer with a few non-profit organizations, and one of the biggest things right now is learning about new medications that have been approved or are in the works. When I hear about these new treatments, I always go straight to my doctors and get their opinion/try them out. There comes the point (where I am right now) that I am willing to try everything because chronic daily intractable migraine controls my life. I need to take back my life in order to live with less pain or pain-free!!
Not everyone in my family understands
I have faced many challenges because of migraine. It is usually an invisible illness, and people don’t take it seriously. Some family members think there is no way I have a migraine every day, but they really haven’t done any research about it to actually understand. My husband and doctor understand, but my husband often says he doesn’t know how to help. My daughter, who is almost three now, will ask if I’m having a bad migraine attack as well as how I am feeling! It breaks my heart because she is so young but knows I’m hurting. Nothing is better than a hug from your child, however!!
My parents are the least supportive
My parents, I would say, are the least supportive. Even my mom, being a nurse, doesn’t understand or want to learn. She knows people with migraines, she says, and they have to lay down in the dark and such and such. They both don’t realize that migraine is different for everyone, and just because they know people with migraine, they believe what cures one will cure it all, and that’s just not the case. I don’t know about anyone else, but I put on a happy face to mask the pain and agony I am experiencing while having a bad attack with friends, family, and colleagues. My job is so great with helping me to promote a social media campaign for migraine awareness. HR even read a document I sent over about migraine at work!!
How I navigate my relationships
The way I navigate the relationships I’m in is to provide information about migraine as well as promote different campaigns relating to migraine. It might be a fundraiser walk or sending articles their way instead of trying to explain without supporting facts! My parents are slowly starting to understand things about migraine, what my experience looks like, how they can actually support me, and in which ways!
My advice for someone new to migraine
My advice for someone newly diagnosed with migraine is to first find a neurologist and/or headache specialist to start brainstorming ideas and start the trial and error process. In the meantime, if you have identified your triggers, then you have taken one of the first steps. I would also recommend joining a support group, whether it be through social media or face-to-face on Zoom. Finally, do some research and learn how to advocate for yourself. If you are new, you might not know how to advocate for yourself. Connecting with others who have migraine attacks and listening to their experiences can motivate or help give you ideas on how to navigate your way through the journey of migraine and the many paths one might take. I personally think that connecting with others will help people feel not so alone and realize everyone in the group is there to support one another!
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