I’ve wanted to address this issue for quite a while, but hesitated because there are no easy answers that fit neatly in a single blog post. Honestly, a volume of encyclopedias probably wouldn’t cut it either.
There are some patients who have unreasonably difficult burdens added to the already impossible challenge of living with chronic (and intractable) migraine. These patients are surrounded by family and friends, yet no one believes them. They are treated horribly, especially during attacks, and expected to endure an unreasonable number of triggers just to keep the peace.
How in the world can anyone with migraine survive in such a toxic environment?
I’ve known people who were not supportive, didn’t understand, or didn’t believe me. None of them were my closest loved ones, though. There has always been someone I could call on for help and I never felt uncomfortable talking about migraine with those closest to me. Together we faced a cold and uncaring world, but inside my safe bubble there has only been love, support, and belief.
So who am I to even talk?
My gut instinct is to tell that patient to run – get away from such nonsense as quickly as possible. Yet that’s not so easy to do, especially for those dependent on unsympathetic loved ones for financial and practical support. Feeling stuck, lost, and hopeless is a given in this situation.
My next instinct is to confront the clueless, insensitive family members. Maybe it would do some good, but more likely it would just create more problems for my migraine friend who has to live with those people after I’ve gone. I’m not suggesting that we give up trying to educate loved ones, but sometimes people can’t be convinced no matter how compelling the argument. Knowing when to share and when to bite your tongue is a survival instinct no migraine patient can do without. Those living in toxic environments must become experts at this skill.
Everyone needs a safe space.
When I suggest that patients in such environments seek support online or hire a therapist, it’s not because I think that will solve the problem. I know it won’t. Everyone deserves to be treated with dignity and respect. Everyone needs a safe place where they can speak their mind, share their pain, and be understood. For some, a therapist or support group may be their only option.
I care deeply about you.
I do wish I could give your loved ones a good talking to. If they can’t be convinced, I hope you are able to get away. Barring one of those miracles, I hope that you can find comfort, understanding, and support somewhere because everyone deserves a safe place to be themselves. I also hope that people come into your life who can offer you the kind of practical support that is so desperately lacking.
You are always in my thoughts and prayers, even if we’ve never met.