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User stories: Chronic migraine

I’ve lived with chronic migraine for over 30 years. “Chronic” means I suffer for over 15 days in every 30—way over. As well as the classic migraine attack, where I feel like there’s a white hot ice pick jammed into my temple, I also get vestibular migraine attacks where additionally I’m really dizzy and fall over a lot, and hemiplegic migraine attacks, which have too many symptoms in common with a stroke. As if I wasn’t already lucky enough to have won those prizes, I also get cluster headaches, which are said to be among the top five most painful experiences a human endures.

My assistive technology ranges from reactive lenses in my glasses, through to being able to control all of my home audio, lighting and heating from my phone; because some days are just far too bright for me, or I need a specific colour of light around the house (usually red).

Occasionally, I need to use VoiceOver to read out documents to me, just as an extra level of input checking. This is due to my brain being really foggy and coherence levels plummeting.

Because my condition is invisible, and most people think it’s “just a headache”, I’ve had a really tough time trying to sell it over the years. Mainly to HR departments and people who deal with timesheets. They don’t understand (or refuse to) that I can be fit for working at home, but not fit to leave the house to work in the office. Those conversations usually go like this:

Me: “I can’t make it into the office, but I’m capable of working from home.”

HR: “If you’re not well, you should be off sick.”

Me: “I’m chronically ill, which means I’m never well.”

HR: “Well you should manage your illness then.”

Me: “I do. By working from home when I’m not feeling up to being in the office.”

HR: “Yes, but if you’re not well, you should be off sick.”

Me: “Sigh…”

My system of managing my illness didn’t suit them. I was never given reasons, other than “We don’t allow that”; no goodwill, no compassion, or a discretionary workaround—just… no. In fact, I got written warnings and told off for it.

With the recent revelation that everyone can actually work from home without many changes at all (I know, right?), I’m hoping those conversations are now a thing of the past. Not just for me, but for people who can’t even get hired in the first place because of their health.

Remote work is going to open up avenues of employment for people who have been housebound for years, with no hope in sight. Now, thanks to a pesky virus, they get to listen to perfectly healthy people whining on and on about how they’ve had to stay indoors for a couple of weeks. They’ll have eye strain from rolling their eyes, I’m sure.

But the old “normal” was broken anyway, so let’s define the new one to include everyone—not just those who are privileged enough to complain about having to keep their fully working bodies indoors.