I never shut up.
Some people don’t like to share their difficulties, especially stigmatized medical ones. They think it makes them look weak, or that it could affect their jobs, their friendships.
I definitely get that. And in a way, they are right. I sometimes feel like a whiny complainer, the same old story every day. I know my Facebook friends probably get sick of it. I did handle some of my fear of over-sharing by creating a “support” list, the portion of my friends whom I felt would want to know.
And being so open about my illness DID affect my job. My colleagues were resentful about how much work I missed, and I kept them in the loop on everything: my hysterectomy, Botox, hospitalizations. I told the patrons as well, I had nothing to hide. But then someone in my department read this blog and reported to the higher ups that I had used the phrase “drug-addled brain” to describe my postdrome feelings while sitting at my desk. It became an issue, and placed me on the path of quitting that job. In retrospect I don’t care that it happened, but blogging only semi-anonymously can definitely get you in trouble. That experience also made me stop blogging for a while.
I worry too that even those who care the most will get tired of the ups and downs. Being prescribed oxygen for example. I shared that liberally, and everyone was super excited. But today I woke up with a bad headache and it didn’t work. Almost 12 hours later I’m still in bed. That is depressing for people to hear. I feel though that to really create awareness about the hideousness of chronic migraine and cluster headache, it’s important to show how it really is. How many of us get our hopes up regarding a new treatment, and have our hopes dashed? Over and over and over again? That is what this disease is like, and our readers, friends, followers and supporters should know that.
Through my blog, Facebook support groups and Facebook friends, Instagram and Twitter, I try to promote awareness every day. I am proud to be a part of this online community and proud to be a pain warrior. And everybody knows it!