What I Wish People Knew About My Invisible Illness
I have had migraine with aura for almost 40 years now, and I have been managing to function, with a demanding job, but it has not been easy. What I wish people knew is that even between headaches, I don't always feel well. I often know that I migraine is coming when I get the sensation of pressure in my head. Then my thoughts slow down. I tell myself to be patient because everything will be harder on this day.
To other people, I look normal. But I take so much longer to do my normal tasks that it can make my temper short. External stimuli like lights and noise are excruciating. Working in an open office is torture. First, the loud voices are impossible to escape, and second, they take away my concentration on the tasks that I must do before I go home, and wait for the headache to start.
Unfortunately, people around me don't know what I am going through, and it often seems like I am just in a bad mood. This makes me feel guilty because people think that I don't like them when I ask them to lower their voices or to talk in another room. In reality, it's just that my super-sensitive brain needs quiet in order to function.
This state of sensitivity can go on for days until I figure out which combination of medicine, rest, and quiet will finally break the cycle. When I started Aimovig, I felt better immediately, even though I didn't have a headache. My brother asked me how that could be, and I said that most of the time, even when I don't have a headache, I don't feel good, either.
Writing this makes me so sad to think about how much of my life I have spent in low-level misery. I wonder what I could have accomplished if my brain functioned at 100% every day. But I am also proud of how much I have accomplished despite my disability. I still come to work every day, and I feel fortunate that I almost never have to miss work or go homesick. I am also grateful because I know there are many others out there who cannot work because they have worse migraine than I do.
I know that I will never be "normal", and I will always have to function under less than optimum conditions. People around me will sometimes expect more than I can deliver. I try to be patient and realize that people without a chronic illness cannot understand what I am going through, and I have to give them a pass. They don't see me lying on the bathroom floor with unbearable nausea, trying to get the strength to go back to bed. They don't understand that a loud conversation at the next desk makes it impossible for me to concentrate. They can't possibly intuit that I can't work on the hospital floor with the heart monitor alarms constantly going off, because it's my brain just can't stand the sound.
To those of you who can't work anymore, I understand. To those of you who still work despite challenges, I salute you! To all of you with migraines, be proud of what you still can do, and always work towards doing more and getting everything out of life that you can!
Have you shared your migraine story with us yet?