I have had migraine disease since the age of 12 but did not receive a diagnosis until adulthood. My migraines remained episodic until July 2016, when I became chronic intractable. I had been ignorant about what migraine disease could be, never in my wildest dreams did I believe you could have a migraine that never went away and therapies failed to treat. I was one of the non-believers, even though I had episodic migraine.
In July 2016, I couldn’t understand why this migraine wouldn’t let go of me. I was spending most of my days in bed in the dark, in tremendous pain. I started visiting my primary care physician quite often, trying and failing different medications. I was also falling into a very deep depression. I felt so hopeless and frankly, a bit suicidal.
After a year, he decided to send me to a neurologist because he didn’t know how else to help me. I finally got into the neurologist in September 2017 and continued to try and fail meds, she ordered an MRI & MRA, which just showed migrainous changes. My doctor did not and has not given up on me, we continue to try different therapies to help manage my migraine disease. We have fought with my insurance company to get me Botox treatments, which took us about a year to get that approved. I am so grateful for her and her medical assistant. But, there was still something missing in my life and that was community.
Community (Noun); from Oxford definition
- A group of people living in the same place or having a particular characteristic in common
- A feeling of fellowship with others, as a result of sharing common attitudes, interests and goals
In mid-2018, I began to follow different advocates from the migraine community and was blown away that there were others out there who were just like me. At that point, I began looking at posts online I did not interact. I still was in a dark, depressive state. Slowly, I began to interact with people in the migraine community and could not believe how loving, sympathetic and supportive people within this community were. I also began to educate myself on migraine and engage in posts on social media. In the spring of 2019, I was given an opportunity to tell my story by a foundation called AWAREcauses (A Way to Act and Remember Everyday), this group allows you to tell your story online. I was so nervous to do this but felt the pull toward it. I couldn’t believe how well I was received! I began speaking about migraine on my social media and in everyday life. I was beginning to build my migraine community and it felt good to be understood and welcomed. I continued to become educated on migraine and the myths and stigma attached to it.
By the summer of 2019, I started my own blog about my journey through migraine. I never considered myself a writer so I approached this as though I was speaking with my friends. My community and friendships kept growing and I joined Chronic Migraine Awareness, Inc. ARMS (Advocates Removing Migraine Stigma) program. I learned that I felt physically and mentally was the norm, not the exception. I began to feel my worth and purpose through advocating! I take every opportunity to educate and advocate now. I have had so many amazing opportunities this past year because I took a leap of faith and joined the migraine community. So now, even though most days I am still in tremendous pain, my mental status has been greatly improved. This wouldn’t have happened without the migraine community. So reach out, join any of the wonderful migraine communities and see what I am speaking about.
The migraine community saved me. Yes, I still have bad mental days but nothing like before because this community reminds me that I am not alone. There is always someone to turn to or to advocate for. We are not alone! We have a community with some of the best people out there. Thank you for being there for me and I will be there for you also. Try advocating for the community, you have nothing to lose and a community to gain.
by Kristen Estep
Chronic Migraine Awareness, Inc.
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