Migraine doulas wanted

Which one do you think migraineurs need most?

Empathy: the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

Sympathy: sharing the feelings of another, compassion

Compassion: a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering

Pity: sympathy evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.

Even when we discover those rare human gems who are actually supportive, migraineurs still feel alone and misunderstood. Generally it’s because people feel sympathy, have compassion, or take pity on us. Not many of us experience true empathy.

Nowhere is this more blatant than in the popular statement,

“If you’ve never had a migraine, you just don’t get it.”

That simple statement tells us a lot about what migraineurs need and aren’t getting. It’s a polarizing statement that comes from an “us versus them” mindset.  Attachment theory teaches us that this mindset only happens after repeated attempts to connect, be understood, and accepted. Polarization is a last-ditch effort at self-protection after all attempts to connect have failed. It comes from a deep wound inside the spirit of almost every migraineur.

Many migraineurs have been subjected to years of not being taken seriously. We have been accused of faking it, having a mental illness, or just “seeking attention”. Over and over again we are told, “There is nothing more I can do for you.” We have lost jobs, friends, family, and so much more. Comedians use our suffering as the punch line of jokes, making us a target for ridicule. Certain drugs are advertised in such a way that makes us look like we are not trying hard enough if that drug doesn’t work for us. We are tired and the only fuel many of us have left is anger.

We build protective walls around us because we must avoid so much of the world in the hopes of just one less attack. We desperately crave connection with other people, yet find that few can tolerate our restrictive lifestyle long enough to stay connected. Friends and loved ones pity us from a distance. Occasionally we are asked how we are doing. When people learn that nothing has really changed, the uncomfortable silence grows. People “walk on eggshells” around us as if we might break. Yet few really stick around.

We are 36 million strong and most of us are lonely.

We don’t need your pity.

We don’t need your sympathy.

We don’t need you to fix us.

We just need you to be with us in our dark quiet world. Bring your smile, a joke, and pictures of your kids, pets, or grandkids. Give us updates on all the latest gossip. We want to stay connected. You can be our lifeline to the outside world.

It’s called empathy.

We desperately need people who will put themselves in our shoes, people who will say, “That really stinks. I can’t imagine what you are going through.  May I sit with you awhile?”

The difference between empathy and sympathy is like the difference between an obstetrician and a doula. When a woman is in labor, the obstetrician can feel sorry for the woman and give her an epidural to ease the pain.  He or she can give advice, make suggestions, or offer solutions. A doula, on the other hand, has no power to stop the pain. Her power comes from her connection with the laboring woman. She knows her, understands her, and empowers her to make choices for herself. She sits with the woman.

I have witnessed the power of this connection and it is unbelievable. Every migraineur deserves to have someone like a doula in his or her life. There is no judgment, no fixing, just belief. I watched it in action when my daughter’s doula gave her a gentle smile and said, “You’ve got this, Jenn,” as she prepared to push. Then she stood by her side without flinching for the three hours it took to deliver her baby. An obstetrician may have insisted on taking over with powerful drugs, forceps, or even surgery. That would have taken away any control she had over her own labor.

Migraineurs don’t need people to take away our power. We need people who will say,

“I believe in you.”
“You’ve got this.”
“I am not going anywhere, no matter how long it takes.”

Will you be a doula for the migraineur in your life?

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 (10)
  • Leynal
    4 years ago

    I love this article. I do think the phrase, “If you’ve never had a migraine you just don’t get it,” is very true, and polarizing at the same time. It’s a cry for help. And I really love the term Migraine Doula, because it is something many people can understand.
    I have shared lots of articles from Migraine.com with people I care about. The ones I’m hoping will stick around. I know they are scared and don’t understand this disease. Hell, the doctors don’t understand it! No one wants to see their loved one in a bedroom in the dark all day everyday. But they must realize- it’s not about them. Right?
    Thanks Tammy for this great article…

  • RTurner
    4 years ago

    Who do I turn to if I have no one? I am more of a burden to my husband (he makes it well known) – NO ONE that I can find in my family has ever had a history of migraines – parents and other immediate family really do not want to take any part – they have their lives and I am a burden. I get the response of “yeah right, she’s just being a baby” or “gesh has she really gone over the top on this”, etc. I have no “real” friends because I am trapped in this body of chronic debilating migraines to the point I’m unable to work outside the house. In my previous life I was a type A personality, CEO/CFO of a very large state association – will never be able to see those days again. Friends and family usually run after seeing and/or visiting with me (I do not make my migraines a topic of conversation – but if you knew me from before – it is definitely apparent). My 14 y/o son is the one who sees me thru and has shown signs of migraines (which makes my husband so mad because husband thinks son is “acting” like me and will not even entertain the thought that son may be burdened with migraines) son is very understanding, but this is not his burden to carry. I try to hide my feelings from him, but he is the one who is with me and see’s me at my best and at my worst. I am embarrassed for previous friends or family to see who I’ve I have become, I stay within the comfort zone of my home, my doc, my Walmart(lol). I will admit I am depressed and each day it gets more difficult to deal with; especially with no one to turn to. I am looking for my doula! (sorry for the rant)

  • Jill M.
    4 years ago

    Roni,

    I’m sorry that you feel so alone and feel like you are a burden to your family. Migraine, as well as other chonic illnesses, take such a terrible toll on not only us but on our friends and family as well. It’s a difficult thing to dealt with not only the pain of the illness, but also the isolation that having the illness creates. Chronic illness steals the lives that we planned for ourselves and the lives that our loves ones planned. You mention being depressed. That’s something that I can relate to as well. I am 43 and have had migraines since I was in my teens and have had depression almost as long. I take meds for both. Have you spoken to your doctor about meds for depression? Migraine and depression are co-morbid diseases, meaning they often occur together. If you haven’t talked to your doctor, I would highly encourage you to speak to him/her soon. If you are already taking depression meds, you may need an adjustment; I have had my dosages increased or the meds changed altogether several times over the last 25+ years. Being depressed and having migraines is no fun; you don’t have to suffer alone. We are all here supporting you.

  • RTurner
    4 years ago

    Thank you, Tammy.

  • Tammy Rome author
    4 years ago

    I was thinking of people like you when I wrote this article. It so unfair that anyone is abandoned when they need support the most. While I don’t have any easy answers, I do know that many people have found support online when they don’t have access to it any other way. Please consider participation in our Forums (http://migraine.com/forums). I will be on the lookout for you. My colleagues and I will be thrilled to stand in as “virtual doula”.

    Please let your son know that he is not alone. My 18 year old son has high frequency episodic migraines. He’s had them since an auto accident caused a TBI when he was 8. He’s one tough kid, very “macho”, but migraines knock him out for days at a time. Some of the toughest men I know are migraineurs. In fact, I believe that a man who can endure migraine attacks is tougher than most.

    Hang in there! We are all here for you.

  • Kim
    4 years ago

    I love this article, but I disagree that the phrase ‘If you’ve never had a migraine, you just don’t get it’ is merely a protective mantra, a protective knee-jerk. It’s like….Hawaii. You can look at the pictures, but until you’ve put your toes in the water and walked in the lush foliage while enjoying the fragrant breeze, you may think you know what it’s all about but you aren’t getting the full comprehension. That is what I mean when I use the phrase. That is what my husband means when he says it. He has watched me suffer from migraines throughout our marriage. When he had one finally himself years ago, it was an eye opener. He was sick down to his toes with it! He was always kind and helpful, but after that he was my advocate and really, isn’t that all we really want? Someone who will help us when the migraine has left us helpless to speak up for ourselves in the ER? I always say that I wouldn’t wish migraines on anyone, but I am grateful for that one that my husband had, simply because it was something that helped him. HE was glad of it. My husband, my doula.

  • ddnben
    4 years ago

    My sisters and I have shared our sympathies all our lives. No one else has ever understood. My grandmother had migraines but my mother didn’t and didn’t remember for her suffering for years and always seemed to blame us for our headaches. Apparently, it just skipped my mother. I’m grateful my sisters and I can compare our notes and try to help each other out.

  • Heather Benton
    4 years ago

    Glad you have your sister with you, it must be comforting.
    I have had them since I was a child, as did one of my older sister, and my brother~my Mom didn’t. She however was ever caring and loving. Her Grandmother was the first person we know that had them! There are so many people in our extended family with MIGRAINES, it is amazing.
    Yet many in my family still really don’t really understand what it’s like to have Chronic Migraines.
    Hope thing go well for you this year.

  • Jkr
    4 years ago

    This is a wonderful article. It’s so hard to explain to others what we need or don’t need. My mom has always been the person to help me through them. Many times all I needed was for someone to just hold my head when I was in the bathroom or to get me more ice packs of just hold my hand when I was in the er. My son is 3 and he just had his first migraine, it was the hardest thing in the world to watch but I did what my mom did for me, I got him through it with empathy.

  • Sandy
    4 years ago

    wonderful article. God bless my mother. since i am not able to work anymore due to migraines, my mother has become my doula re: migraines. can’t wait to show her this article. thanks Tammy.

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