Truths People Who Get Migraines Wish Others Understood
People who get migraines explain what they’re like, how they’re not “just a headache,” and what everyone needs to understand.
Holidays like Thanksgiving, Christmas, New Year’s Eve, and Valentine’s Day beg a lot of questions from family about relationship status. Becoming a fate worse than Facebook, I must wade through months of interviews, interrogations, and the worst case set-up scenarios. And I’ve discovered that being 30 brings a new, more specific set of questions to the party. “When are you gonna have kids? You only have so much time you know?” or “Don’t you think it’s time you settled down?” I just smile, take another triptan, and nod my aching head. Closing my eyes for some welcome darkness, I think: mixing holiday merriment and migraines is just not natural. Day-to-day activities and migraines aren’t always compatible, much less twinkle lights, egg nog, and gift wrap! I want to shout: “I’m already in a relationship. It’s just destructive, unhealthy, and unorthodox. His name is Mitchell, he’s my chronic migraine! And is our life together….”
There’s a distinct moment at the beginning of any new friendship that ends to grab some attention. The first time a person hears me say, “Damn you, Mitchell! Damn you to hell!” or “Mitch is being a b***h,” or “Mitchell is acting out, sorry guys, I can’t do anything tonight.” I forget that my relationship with Mitchell is unusual. My family knows, my old friends understand, my best friends join in the banter, even my doctors’ answering services understand my situation with Mitch; but acquaintances still don’t really know what to do with us. It’s hard to adequately explain our relationship or how he became so organically rooted to every facet of my life.
Mitchell ruined my 20s. I was tethered to his side, forced into a drug culture that did not facilitate easy studying or learning. He preferred dark spaces, so we would sit in the dark, and I would spend days trying to figure out a way to be productive without disturbing him. I was terrified of making him angry. He was abusive whenever he felt the need to assert himself. Which he did often. He couldn’t handle pressure well and would often react poorly to any change to his system: any stressor could flip his switch.
I became this wilted plant, sitting in the dark apartment we shared; he refused to let light invade the space, and I just sat stock still and silent all of my waking hours. The wrath of Mitchell far outweighed any benefits reaped from standing up, throwing open the curtains, and asserting myself. If I acted against his wishes just once, I would end up paying for it for days.
So, I stayed quiet.
At first, I did try to change him. I thought it was a phase and that it was possible. After a year, two, three, I knew he would be sticking around for the foreseeable future. And I stopped trying to change him. I went about living my life per usual, but there were times that he was such an overwhelming presence that I was forced to step back from school, friends, and family. He got into my head, and he set up shop: he started drilling and mining, digging and scraping away at my independence. Until I was his and his alone.
I sought help. No one had a plan that could get me away from him safely. Any escape would need to be successful because if not, the result would be tantamount to solitary confinement and a life of blinding pain.
Mitchell and I have been together for nine years. And yes, we are still together. Despite all he has done and all that he will do, I cannot rid myself of his abuses. I’m always hatching plans to get out of this gnawing relationship and I am skeptically hopeful that I will actually get out of this hell one day. But for now, we’ll just march forward to 10 long years: my longest relationship. I usually say it as a joke, but it’s probably the most pitiful thing I could say. I often share aching truths behind veils of laughter.
There are times I wonder if I can handle him being in my life anymore. But Mitchell is the name I have given my anthropomorphized, chronic migraine, and I can’t ever actually escape him. So, when I’m asked if I’m seeing anyone, if there is anyone special in my life, I don’t know how to answer. On the one hand, yes. Someone very special. But, on the other hand, I can’t exactly introduce Mitchell to everyone as a viable life-partner. How do I explain his role in my life? Would anyone actually understand if I tried? But it’s because of Mitchell I can’t even imagine meeting someone in the outside world to bring home to Mom. I don’t even feel the outside world is a privilege I should expect. I’m beaten down into a chronic fatigue and feel a distinct disillusionment with my previous hopes or dreams. I wanted a family at one point, I wanted children. But I now have this tyrannical toddler figure that has taken over my brain and body, and he’s all I have time for. A man-child that demands respect and takes it willingly.
In the candle light of the holidays, surrounded by family and friends, I always set one extra place at the table. Mitchell has been with me and mine for nearly a decade. Is during these 10 years of Thanksgivings, Christmases, New Year’s Eves, and Valentine’s Days I’ve realized that “chronic pain” and “life-partner” can be one and the same entity. In this instance: a scrappy migraine named Mitch. Even if a truly mortal life-partner enters the picture, that spot will always be occupied by Mitchell, my chronic pain, as well. I just wish I could explain this to the inquisitive minds wondering where my husband or children are.
And so I carry on: both single and unavailable, my life-partner and me.
Here’s to all of our years, Mitchell. Happy Holidays, you jerk.
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Thinkstock photo by GeorgeRudy
Lisa Jacobson, Founder of The Daily Migraine, discusses how to manage Thanksgiving challenges.
Lisa Jacobson has had over 9000 chronic migraines and runs The Daily Migraine.
I’m in a period of relative stability right now, for the first time in about five years. I am still getting migraines, but it’s easier to deal with them, and I am not as incapacitated and debilitated as I was before. I am so thankful for that. For the first time in years, I’m planning my future, applying to jobs and internship programs without having to worry if I won’t be able to follow through. It’s a relief, actually, to actually be able to think like this. I didn’t have this luxury for the second half of my teenage years. I mostly just tried to make it through each week.
I’m still a part of many support groups online, and I write for my blog and The Mighty about my experiences with migraines. It’s become helpful for me to write, because when I was really sick I basically lost my voice. I lost my ability to speak coherently, write, read and focus. Now that I have regained my abilities to function, I am trying my best to speak about my experiences because I know how isolating and frustrating it can be to lose things we all take for granted in life.
Nowadays, I feel a pang of guilt when I sit down to write. I feel a bit hypocritical sometimes, because I am not as sick as I used to be. I think of all the people who are currently sick, and how I am so lucky to be in the place I am in right now. I get so caught up in comparing myself to other people and their illnesses that I forget I, too, went through hell. Just because I am relatively healthier now than I was then does not mean my experiences and my feelings are invalid.
We need to stop comparing our illnesses in terms of how severe they are, because chronic illness affects everyone differently. I’ve had people talk to me and say, “Oh, I get migraines, but not as bad as you do.” Why do we feel the need to qualify our experiences and apologize just because sometimes we meet others whose conditions are more severe or “better” than ours? There’s no prize for being the sickest, no title or headline for “winning the sick game.” No good can come out of negative comparisons. We already deal with enough shame surrounding our illnesses. All of our experiences with chronic illness matter, and we need to remind ourselves of that.
I share my stories about my hospital experiences and the hundreds of med trials I’ve been on not to make other people feel bad for me, but to just share my story. Not to compare, not to analyze – just to get it out there.
I often have to remind myself that for me, my illness was bad. When I was at my worst, I didn’t leave my house, slept for 15 hours a day and could barely leave my bed or even walk down the stairs. I lost everything about myself I loved. I lost my extracurriculars, my academics and all of the hopes and dreams I had growing up. I thought I would never be able to do anything meaningful with my life because I could barely function. I lost my identity. My chronic illness became my identity.
I’ve spent the last two years rebuilding myself from scratch. Who I am now is completely different from who I was before I got sick. But I went through a period where I had to deal with everything I couldn’t mentally deal with when I was sick. I’ve experienced the helplessness, the loss of identity and control and the medical traumas. It’s a lot to deal with, for anyone. For me, writing about my experiences was a way to think through my life, a way to cope with the cards I’ve been dealt. I feel very lucky that right now my life is a bit better medically than it was for most of this year, and exponentially better than the last five years of my life.
I am alive. That’s how I often describe how I’m doing these days. I’m alive. I’m getting through everything, one step at a time. My experiences are part of who I am, but they have also shaped me into the person I am today. I’ve known what it’s like to lose almost everything that’s important to you. It’s such a weird feeling knowing the world is at my fingertips, for the first time in forever. There’s still a part of me that’s terrified I’ll lose everything again. But if I live like that, I will never be happy. I’ll always be scared, terrified to dream because of how easily it may be taken away from me. One of my good friends has a saying: “if your dreams don’t scare you, they aren’t big enough.” That dream could be mustering up the courage to talk frankly with your doctor about a treatment you’ve heard about, planning an outing or, for me, looking into summer public health internships. I’m just starting to realize I can dream again. I hope you all can, too.
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