Finding safe space

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Miss B
    3 years ago

    Wow, firstly thank you for this article! I have had daily migraines for the last 2-3 years now and it is only in the last six months my family have realised migraines exist.

    I’ve been through the ‘I don’t believe you can have them everyday, you don’t look unwell’ to the we have emotional fatigue with your situation. This was after 8 neurologists in 3 months, spinal taps and every other type of investigation after it got so bad I couldn’t leave the house by myself.

    I’ve cried, screamed and quietly tried to educate. The educating has proved to be the worst as why am I a walking medical encyclopaedia. I’ve had accusations I’m anorexic when it’s the medication that’s made me loose weight. I’ve been told to just go out and see friends get a job and think positively.

    Getting myself into cbt has been my lifesaver and restored my strength. Both my parents have recently had migraines for the first time and a lightbulb has gone on for them.

    It’s hard but they’re not bad people they just like a lot of people can’t understand something they don’t see, unless it’s something more mainstream like a broken bone or sadly cancer.

    You can get through it, external help was the way forward for me! we are all so much stronger than we give ourselves credit for X

  • Kayakerjo
    3 years ago

    I feel so lucky that my father also suffers from migraines. His support, even more than other people”s, helps on those days I don’t feel believed and especially when I start to question or doubt myself. He doesn’t always say what I want to hear, but he always says it from a place of belief and love. And that makes all the difference. I encourage everyone to find someone who can provide at belief. As Tammy said, it doesn’t fix everything, but it sure helps!

  • Brooke H moderator
    3 years ago

    Hi Kayakerjo, Thank you for sharing! You sound like you have a very special relationship with your father. It can absolutely help when a loved one understands the experience of migraine firsthand. Thank you for being a part of the community! Warmly, Brooke (Migraine.com team)

  • LConlon
    3 years ago

    I am lucky my immediate family members understand when I have to hide away in my dark room. I keep my world very small so I don’t have to cancel plans, disappoint people or upset someone because I have to cancel. It’s hard enough to deal with chronic headache but to add to the stress because of insensitive friends or family would be awful. When I can I try to educate the difference between headache and migraine. Sometimes I break through and they get it.

  • Brooke H moderator
    3 years ago

    Hi LConlon, Thank you for sharing your experience with the community. It sounds as though you have a small group of people who aim to be supportive! Sometimes that can be better than a large network with those who don’t understand. I’m sorry you are dealing with chronic migraine. Please know you’re not alone! If your family is interested in learning more this article may be helpful in clarifying some of the misconceptions: https://migraine.com/blog/10-things-i-want-to-share-about-migraines. Please share here anytime! Best, Brooke (Migraine.com team)

  • Sylvia T
    3 years ago

    Dear Tammy, thank you so much for this. Sitting here in tears after another loud and nasty argument with my partner. My head hurts as you surely can imagine. Your words mean a lot, somebody who really understands. Wishing everybody a pain-free day in a non-toxic environment ❤️

  • DonnaFA moderator
    3 years ago

    Hi, Sylvia T, sorry to hear that you’re having a difficult day. Please know that you’re not alone, and that we’re always here to share support or just to listen or keep you company. If you haven’t already, please visit our Facebook page. We’re glad you’re here. -All Best, Donna (Migraine.com team)

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