I was diagnosed with episodic migraine in 1994 and had the disease mostly under control until 2013 when the disease became intractable. I lost 7 months of my life to it that year until a medical leave helped restore some normality to my existence. In June of 2016, this insidious disease once again began to wreak havoc in my life and by September of that year I lost my job and livelihood. I became chronically intractable once again only this time I also acquired several co-morbid conditions including — but not limited to — major depressive disorder with suicidal ideation, anxiety, vertigo, dizziness, syncope, dysautonomia, tinnitus, nausea, vomiting, medication-induced anorexia, aphasia, short-term and near term memory loss, extreme heat and cold sensitivity, hemiplegia, ocular disturbances including hallucinations, cacosmia, allodynia, phonophobia, misophobia, and a host of other symptoms.
It is a miserable existence to survive day-to-day, and that is just it. Living with migraine is existing – not living. It has become one of my missions to help educate other people about this disease without preaching to them about it. Educating others is key. This is not just a headache, it is an invisible disease that so many other people do not understand. It is debilitating but you must manage the symptoms because there is NO cure. I want other people to understand that I have a life, but it is not like their life. I need accommodations and understanding, not pity. I have become recognized as “disabled” because of this condition and it has changed my life and my perception of myself. My career was a very large part of who I “was” and I don’t know that I will ever be able to hold another job doing what I loved. I’ve since learned that stress is a major trigger for me and there isn’t a job today that doesn’t come with stress.
I don’t want anyone to feel sorry for me; I just want people to understand that I am a human being with an incurable disease who is trying to live my life the best way I can. I want to tell funding agencies in the federal government that we want and deserve our fair share of research money; there are more of us suffering in the US from migraine disease than many other diseases. We’d just like a fair shake. We deserve to be heard.
When I can’t walk 25 feet without feeling like I am going to pass out, I’m not faking it – it’s real. When I’m in the dark room crying from pain, it’s not because I’m just sad – it’s real. When I can’t eat anything but yogurt or cottage cheese – it’s real. When I’ve lost 45 pounds from nausea and vomiting; it’s not a fad diet that I picked up somewhere to look good – it’s real. It’s all so very real and it’s not “just a headache.”
