I have a neurological condition called Paroxysmal Hemicrania (PH). I have it in it's chronic form. It is an horrific condition, for which I take a fairly simple - but nonetheless toxic - medicine, in order to control the severity of the attacks. As far as I know I will be on this medication for the rest of my life. The condition cannot be 'cured' by kale, yoga or a rub down with some oils and rocks 🙃.
It's one of a group of chronic pain conditions known as Trigeminal Autonomic Cephalalagias (TACs). This group of conditions includes the fellow horror-pain syndromes, Cluster Headache, Trigeminal Neuralgia, SUNCT syndrome and Hemicrania Continua. They are also colloquially known as 'Suicide Headaches' (because sufferers often die by suicide, unable to continue living with the pain, particularly if they're not adequately supported or even believed).
There are so many conditions people may be living with which may render them disabled or chronically ill in some way. They're not always visible, and you may or may not realise what another person is going through just to get through the basics of the day. We can't all be expected to know about every condition out there; even doctors don't. My own GP was looking at the same webpages I had googled when I first went to her, and TAC support groups are replete with stories of people waiting years for an accurate diagnosis, or being doubted by family members ('it's just a headache, so suck it up' etc... 😑). Not knowing is perfectly fine, but we should be careful of hasty proclamations and actions that are essentially based on our ignorance ('I've not heard of x, so it can't be a real problem' etc.).
For what it's worth, I'm posting this for whoever needs to see it; I keep seeing multiple variations on the theme of people generally not taking into account the fact that not all conditions are immediately visible, or that they've perhaps underestimated the possible implications of someone's condition. We should therefore perhaps pause before making a hasty assumption about what others are doing/not doing. Particularly now that we're in the midst of a pandemic where so many variables will impact the possible implications for each of us.
Also, nothing was coming up in the tags for PH or TACs, so guess I'll be the first...
Organisation for Understanding Cluster Headaches is an incredibly important support group that also has a tool for helping understand any symptoms you may have, and the differences between each of the conditions and their treatments.
https://ouchuk.org/
Ouch, Raising general awareness of cluster headache and offering support and guidance through our helpline and user forum
