Over on Instagram a little while ago there was a comment on a migraine-related post that said [to paraphrase] “she couldn’t have had a migraine though because she was chatting on the phone”. A number of other people agreed, and the conversation moved on. The comment really stuck with me though. How many of us have had to explain our illness or try to make excuses for it? It seems to be an almost universal experience. Our unique experience might not quite fit the box that others assume your illness should fit into. You are still unwell, your experience is still valid. The comment likely stemmed from another frustration faced frequently by migraineurs - this conditions really ( really ) isn’t just a headache. When someone says they have a migraine and actually they mean they have a headache that will disappear with panadol/tylenol, that is frustrating. It contributes to the misunderstanding that abounds about migraine disease. The tricky thing is though… who are we to know if someone’s headache is a migraine or not? How can we know if another person’s threshold for coping with pain is the same or higher than our own? We can’t. That’s a discussion for them to have with their Doctor. I for one refuse to be drawn into the darker side of the usually supportive migraine community on social media. The shadowy side that leaves you questioning if you are really sick enough to belong.
You are no less deserving of help and attention if your migraines or other conditions don’t seem as bad as someone else online.
Over the past 20 years my migraine has shape shifted considerably. I used to get vibrant zig-zagging auras and tunnel vision. Sometimes the pain was so bad I couldn’t cry because it hurt too much. Other days I might have been dizzy and light sensitive but head pain was a minimal throbbing. These days, I have attacks where the only prodrome I get is clicking in my jaw and neck. Then I’ll experience one with proper aura and prodrome including intense nausea, sound sensitivity, blue flashes and a desire to sleep for a year. As my migraine has shifted to chronic, actual attacks have started to take me out of action less frequently. Part of this is sheer necessity - as I Mum, I can’t usually just retreat to the dark and go to bed. I’m having more of the 3 or 4 out of 10 on the pain scale attacks - they are awful, but I can still function. I can go shopping, talk on the phone, write a blog post, play with my daughter. I am still having a migraine attack, mine is just different to yours.
We don’t need to conform to one picture of chronic illness to be unwell.
Some with vestibular migraine might not even get a headache at all during an attack. This is still migraine. We don’t need to conform to one picture of chronic illness to be unwell. You are no less deserving of help and attention if your migraine or other conditions don’t seem as bad as someone else online. After my chronic migraine diagnosis in 2018 I still didn’t allow myself to use that label for months. I felt that I didn’t qualify unless I had a headache every day. Never mind that I was having them 18+ days a month, it wasn’t quite bad enough for me to admit that I was unwell. It took me accepting that I needed help as much as those with daily headaches for me to get the care I needed - from Doctors and from myself. Social media can be such a positive and supportive environment, but there’s a shadow side. How does your migraine manifest? Have you ever struggled with not feeling sick enough?