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Living with Migraine

Dealing with family who just don't get it

  • By Ellizaryn

    Call me Ella. My first documented migraine was at age 8. I average 20 full migraine days a month and have headache or vertigo the rest of the time. Three consecutive pain and nausea-free days makes my month. I’ve tried literally everything, and am now on nothing but medical cannabis, intravenous Imatrex, and a very strict gluten-free and vegan diet.

    I ended up graduating from high school at age 13 having mastered 9 instruments and 8 years of vocal training. I went to college immediately on a music and academic scholarship and graduated at age 17 with a dual degree in Music Theory and English Composition. I took a year off before I went back to college to try to study up to go to medical school (to study neurology, of course!).

    I lasted three years studying biochemistry, but last year I went 108 days in a row with migraine, lost 20 lbs, and withdrew from school on my doctor’s orders (my commute was 45 minutes East one way, so I was driving into the sun both on the way there and on the way back). I immediately started taking music and tutoring students, and in the intervening year have hired student tutors and am bringing in 5K a month.

    My family has some issues with valuing accomplishments too much. I know this. I’ve seen 4 different therapists about it. My mother tells me to “suck it up,” that it’s “mind over matter” and that if I “believe the pain will go away, it will; pain is entirely mental anyway.” If all else fails, pray more. My parents were pretty disapproving of my choice to withdraw from school, and though they’ve calmed down due to the success of my business, I still get a lot of flack whenever I take a full or partial day off for ANY health reason, particularly migraine. They’ve also just started calling it an excuse for me to be a pothead, as though they don’t believe I’m really in pain and that I can produce puke on command. My mother has found my on the bathroom floor with my face glued to the toilet seat at 3 in the morning and her reaction was “oh, you’ve got to be kidding me!” and an immediate exit.

    I’m getting married in March, and though we come from a crazy conservative background, we rented our own house six months early to get me more autonomy. His family is 4 hours away doesn’t know we are living together, and his dad (who is performing the ceremony) would FREAK—we’re both having nightmares about his parents finding out and trying to stop the wedding. But we are still living in the same town as my parents, and my mom calls me several times a day. I don’t answer often because I work 60+ hours a week, but when I do she always asks me how I’m doing. If I’m honest, I get a lecture. If I lie, she calls me on lying and gives me another lecture about needing to make sure I look and act normal or I won’t be successful and will end up on the street. During migraine I get big dark circles under my eyes–she lectures me about not wearing enough makeup, and my teenage sisters add to it, pointing out that I wouldn’t “still be fat” if I really was as sick as I claim (I’m 110 lbs and a part-time yoga instructor).

    My family is very important to me, and I love them with their faults, but their treatment of my condition is adding to my stress, and my fiance insists that it’s borderline abusive. Do any of you deal with family that just don’t get it? How do you cope? Every therapist I see suggests I just remove myself, but I’ve already moved out and am not going to cut them out four months before my wedding.

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  • By Katie M. Golden Moderator

    Nia,
    I agree with your fiance that your family is borderline abusive. I’m sure it’s not their intent to hurt you, they show their love by pushing each other to success (clearly you and your siblings are high achievers, thanks in part to your parents). It just seems they lack empathy and you could spend your whole life trying to change them or you can focus on how you respond to them and not letting it stress you as much (that could take years of practice!).

    So I think your upcoming wedding is a good chance to re-set your boundaries with your family. As you and your husband start your new life together, it’s common for your relationship with your family to change. Take this opportunity to not let them call everyday or look for their approval in everything you do, your husband should be that person for you. And he sounds amazing.

    I tell people that sharing articles or stories with your family can help them to understand your illness better. Sometimes hearing it or reading it from a third-party can help change their perspective. Honestly, I’m not sure if it would help your family- they seem a little stuck in their ways. Maybe another option is to take your mom with you to a doctor’s appointment. I would hope she would respect their opinion.

    I’m really sorry you are going through this. Having support when you have a chronic disease is so important and it’s painful that your family just doesn’t get it. Thankfully you have your fiance who is sympathetic.

    I wish you the best with your wedding!

    -Katie
    Migraine.com Moderator

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  • By BonnieBMigraines

    Going through something very similar… Seeking advice on how to deal with this…

    There are so many triggers and my very good friend saw me have a glass of red wine and doesn’t understand how I can ever drink red wine if it is an obvious trigger…. I tried to explain that I have dealt with migraines for 20 years and how SO many things are triggers that I would basically not have a life at all if I avoided every single one of them; however, he thinks I am “not trying,” if I am not doing everything possible at all times to avoid all triggers… His latest argument is that I should not look at screens on computers or watch TV since he read somewhere that those are triggers.

    This is a VERY close friend of mine. I think he believes he is trying to help, but he keeps comparing me to his diabetic brother who used to be an alcoholic…. It’s so frustrating. I could go on and on, but I feel your pain and I need advice on how to deal with this…. your situation is much worse… but, I feel like I am being accused of doing this to myself… although I have had migraines for 20 years. Triepractically EVERYTHING..

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    • By Ellizaryn

      Hi Bonnie,

      I don’t know what to do either, but I thought I would at least try so you know someone is listening.

      Education is the only way to get through to some people, and a lot of them even that is not enough. Have you tried explaining that triggers “can” cause migraine but they don’t always do? It’s best to avoid as many triggers as possible–for instance, I get my fiance to drive me to work as much as possible because headlights are a major trigger for me. But that doesn’t keep me from driving–or using computers, or drinking a glass of wine on a special occasion (also a trigger for me, though it is the last of my MANY food triggers that I actually am eliminating from my diet). Does this mean I get a migraine EVERY time I drive? No. But if I already have a headache, or it is combined with another trigger (such as stress or weather or allergies), then I’m down for the day.

      If your friend is observing you tolerating known triggers, they very well could mean to help you out. I used to get insulted when people asked “where are your sunglasses, I thought the sun was a trigger?”, but now I just say “Oh, thanks for reminding me,” because you know what? I actually DO need to wear sunglasses all the time… If your migraines aren’t under control yet, going out of your way to avoid more of your triggers is probably important. For the triggers that you flat out can’t avoid without so much hassle that the stress will cause a migraine—explain that to your friend…

      But some people just can’t get it.

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  • By Mindnights

    for Ella alias niastevens: I am so sad reading this. I deal with migraines several years and I know, how bad can that all be. I had more luck with my family, since a few members of the “clan” lived with migraines too so they can understand what I’m going through. I too am a mother of a little girl and I cannot even imagine not helping her when I would find her in bathroom during puke issues etc, no matter what happened to her. Closing eyes over some troubles doesn’t make them disappear. Your mother should know that you can even end in hospital for a longer period of time and then she would be maybe sorry for her and your family’s reactions. I think your sisters’comments are rude. Are they neurologists to judge you? Honestly, the whole family really need a massive education about the migraine thing, the difference between a headache and migraines is huge. Maybe a help from some specialist could since they don’t take you enough seriously.

    I couldn’t survive in such abusive area and I hope your marriage will be much, much better place. As Katie Golden wrote, it’s the best opportunity to build some border around yourself, in a good way, to avoid their attacks, even if you know, they do it for love. In my world, I would say: Thanks mum, but enough. I am an adult and married woman now and I know better, what’s good for my life. I start my new family life and that requires more respect from you all. If you don’t agree, feel free to not contact me. I know, Ella, it’s rough, but you have to save yourself from these abusive vibes to feel better. I pray your marriage will be the sweetest place for you and your partner.

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  • By Mindnights

    for Bonnie: Sometimes the effort to help is just too much. Maybe some article about “how to talk to a migraine sufferer” could help. I remember there was such thing on migraine.com, not sure where. Your friend surely eats even food can be a trigger of various illnesses, goes in the sunlight even it may cause cancer etc. Even breathing can be dangerous, but it doesn’t mean that we shouldn’t do it :-). I would be strict about explaining that every illness is different, every patient is different, he cannot compare alcoholic diabetic man to migraine…

    I wish the best for you, hoping he will understand soon.

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  • By Tammy Rome

    Ella,

    I am so sorry your family is so unsupportive. I have a little different take on this issue. Hopefully it will help you and everyone else who has posted here.

    I am a retired family therapist. Unfortunately, I used to see this kind of thing all the time. Your family is being abusive. It is unacceptable. Boundaries need to be set as quickly as possible before they sabotage your engagement and future marriage, too. It is good that your fiance is supportive. He may find himself in the position of protecting you from them more than a few times over the coming years.

    Get the book “Boundaries” by Dr. Henry Cloud. If you still need help after reading it together, hire a good family therapist who will help you set and maintain healthy, appropriate boundaries with your family.

    It does no good to educate them about migraine until they learn to respect your right to govern your own life free of emotional and verbal abuse. You deserved so much better!

    Please write back if you have more questions or just need to talk.

    Tammy Rome, LPC

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