Honoring My Sister's Migraine Journey on Remembrance Day
The content includes information related to mental and emotional distress and it might be upsetting to some people. If you or someone you know have thoughts of suicide, have attempted suicide, or experience emotional distress, contact the National Suicide Prevention Lifeline 1–800–273–TALK (8255) or Live Online Chat. To get general information on mental health and to locate treatment services in your area, contact SAMHSA Treatment Referral Helpline – 1–877–SAMHSA7 (1–877–726–4727).
Migraine "Remembrance Day"
On June 7th, folks throughout the migraine community will be recognizing “Remembrance Day.” It’s a day during Migraine Awareness Month, where we come together to honor those who have lost their battle with this life-altering disease.
For my family, June 7th will make the 6-year anniversary of the day with lost my sister, Melissa, to suicide. 6 long, long years spent trying to honor her story and make peace with the most painful chapter of our lives.
My sister's pre-migraine years
Melissa’s life was relatively normal until about the time she entered adolescence. She was the middle child, with an older sister, and a younger brother. She spent her time with friends and family, worked hard in school, and always made sure she was the life of the party. Those years—pre-migraine years—are easy to look back on with fond memories. I think of the times my sister would come into my room to ask me how her outfit looked on that specific day, or would spend her nights terrorizing my friends and I. However, once my sister began having more frequent migraine attacks, those moments became fewer and fewer.
Not understanding migraine disease
As the youngest child, I didn’t have a firm understanding of my sister’s experience with migraine as I went through high school. From my point of view, all I understood was that she was spending most days locked away in her dark room. Well,in between numerous trips to every neurologist and hospital within hours from our hometown. For most of those visits, it was my mom accompanying my sister, with me staying at home. This distance, in addition to teenage self-centeredness, made it easy for me to become frustrated with my sister’s disease.
Wishing I knew migraine was not "just a headache"
I, like too many others, wanted to dismiss my sister’s pain as her being dramatic, and wanting to have the spotlight on her each and every day. As someone who never experienced migraine attacks on that level, it was hard for me to empathize with my sister. It was easy to think she was overreacting, and that it was just a headache. I struggled to acknowledge my sister’s condition for what it was—a debilitating neurological condition. Looking back, I wish I would’ve had the knowledge that I have now, and that I could’ve supported her better throughout her toughest years.
The hopelessness of chronic intractable migraine
My sister’s journey with chronic, intractable migraine left her isolated from the outside world. That isolation, combined with the hopelessness that comes from trying treatment after treatment only to find very little relief from her pain, ultimately led to her decision to take her own life.
I share this little snapshot into my sister’s journey because I know this story is far too common. There are millions of individuals who struggle with this disease, who are continually being misunderstood by doctors, friends, and family members. Some, like my sister, are no longer with us in the physical world, which is why we choose to remember their lives on this day.
Breaking migraine stigma by coming together and sharing our stories
While this day primarily serves as a reminder of what is missing, I also believe it presents an opportunity to share our stories with the hope of spreading awareness about the challenges faced by the migraine community. Only when our community stands in solidarity with one another and is open with our struggles, can we break the stigma surrounding this disease. We take these actions, so we do not lose one more person to their struggles with migraine.
Finding people in migraine online communities who get it
I believe that is what my sister would’ve wanted us to do. While she wasn’t a part of the online migraine community for very long, we know how much each person meant to her. She wrote in a 2011 article for Migraine.com titled, Still Searching to get my Pre-Migraine Life Back: “This website has helped me so much too, with the information and the people on here who UNDERSTAND… which none of my friends do. I am young and they don’t get it. They think I get ‘headaches’.., they don’t understand why I need to go to the hospital, or can’t work, or can’t go to school with a “headache.”
All that to say, there is an incredible amount of power within this community. Although migraine can often lead those struggling to feel alone, this community reminds one another that they will never truly be alone.
Honoring my sister's story by recognizing the pain she endured
Today, on this Remembrance Day, I will take a moment to reflect on what is lost. But I will not feel sorry for myself—for my pain has provided opportunities for me to connect wither others that I may have otherwise never had the chance. I’m grateful for the strangers turned instant friends, and the conversations had with those who knew my sister or have learned of her story through social media. Finally, I’ll choose to honor my sister’s story by recognizing the pain she endured, but I’ll also have a smile at those little moments that are tattooed into my memory—because her life should not be defined by her disease.
Have you checked out the new Community Hub yet?