I’ve been fortunate to receive very little negative feedback on this blog. Yesterday was one of the rare days that another migraineur left a rude comment. In response to the post Showing Others What a Migraine Attack is Really Like, Lynda wrote:
I think you should worry that you are clinging to your migraine to define you and that you wouldn’t know who you were if the pain went away, so it is helping you by not going away. I am a chronic migraneur as well, every week, I lose a night of sleep at least and two days to a horrible headache, but I have managed them for 2o years of work and supporting a family and myself. yes there are days I must come home. but oddly my headaches wait til friday night to take me down so I can perform my tasks. I question your will when I read your attitude. You are lucky to have your husband or you would die, or wake up.
There are so many possible responses to this. I can hear the universal mom’s voice telling me to ignore the meanie and not share her comment with you at all. That Lynda is just jealous and I’m giving her more attention than she deserves. Buddhist psychology would say she is lashing out from her own pain or fear and that her words have nothing to do with me. There’s the snide part of me pointing out that losing two days a week to migraine does not meet the clinical definition of chronic migraine, which is
15 or more migraine days a month15 headache days a month, at least eight of which are migraine. The martyr also rears her head — “I’m sorry you’re suffering so much. I hope lashing out at me has brought you some relief.”
Underneath all these possible responses swirling in my mind is the most puzzling part to me. Why? Why does one migraineur feel the need to judge another’s experience? Why do so many migraineurs assume that their migraine attacks are representative of everyone else’s?
Migraineurs and their migraine attacks are all so different. The definition of chronic migraine encompasses a vast range of pain levels and numerous possible symptoms. There are people who have 15 migraine attacks come on each month, but are able to abort them with triptans before the pain even begins. Then there are people who have level 8 or higher pain every single day. That’s right, one chronic migraineur can experience no pain at all while another has daily pain on par with childbirth, according to this excellent comparative pain scale from TIPNA.
As confused as I am about why people are so mean to each other, I also feel the sting personally. I write this blog to help myself cope with and comprehend daily headaches and nearly daily migraine attacks in the hope that I can help others who face similar challenges. I share my most vulnerable thoughts and describe moments I would rather no one ever know. Only in the last year have I opened up completely, sharing what my days are really like and that the emotional cost of migraine is so high that I have considered suicide. A weak person would not open up in the way I have, though it has taken more than a decade for me to comprehend how strong I truly am. Yet I still fall prey to the internal voices that question the severity and validity of my illness. External voices are not welcome in the choir.
The havoc that migraine has wreaked on my life and my identity is immeasurable. I have accepted migraine as part of who I am, but the only way it defines me is in the tremendous resolve I employ to keep it from overtaking me. In no way do I cling to this illness for my sense of self. Instead, the opposite is true as the illness attempts to suffocate my personality. The moments in which migraine is not at the forefront are blissful. I had a few good hours last night, dancing and baking and laughing. My identity shines when I am not in the throes of migraine.
Just as I have not let a lifetime of migraine dominate my sense of self, I will not allow one person’s meanness bring me down. Thanks for the armchair psychological assessment, Lynda, but you are completely wrong. Well, not completely — I am incredibly lucky to have an emotionally supportive husband who is able to support both of us financially. It is quite a stretch since he lost his job last year and is starting his own business, but we are making do for now. Without him, I would be living with my mom and spending all of my low-migraine-pain time trying to earn money. Now I just spend most of my low-migraine-pain time trying to earn money; in the rest I can dance and bake and laugh. For this I am immensely grateful.
Plenty of weeks go by when I am too sick to even laugh, but the small bits of time I allow myself to do what I love keep me from withering away in bitterness and resentment. I hope you the same for you, Lynda, and for every reader of this blog. Seeking joy wherever you can find it is imperative in a life with migraine. Without it, misery becomes the disease.