A Partner's Perspective
(By email, I asked my husband Sam to write down his thoughts about living with my migraines. Here's what he chose to share.)
When one's wife is having a severe migraine it's a dichotomy. On one hand it's horrible that she is in pain and suffering and there is literally nothing you can do. With most illness you can comfort your loved ones. You can hold them or at least hold their hands. You can talk with them. Read to them. When my wife has a migraine I can't do any of that. At best I can sit in the dark beside the bed, position my hand right next to her, and remain as still and silent as possible. (Which is hard, because still and silent are completely counter to my nature.)
On the other hand, my wife having a migraine is not a big imposition on me. Her needs are simple: a dark quiet place, water, and food. I can brew some ginger tea, bring some crackers, water, and the like. Once I've stocked the bedroom with food, water, and an emergency pot [for vomiting], just in case, I can safely go to work, a movie, or grab lunch/dinner. It's not like she's dying. Just suffering. And being the wonderful person she is she doesn't want me to stop having fun. [Editor's note: I swear I did NOT insert that last sentence!] Most days when my wife is trapped in the bedroom with her suffering I'm just fine. I'm a bit quieter than normal, and I have to sleep on the couch with the dog, but honestly the couch is quite comfortable and I like the dog. Often I'm happy and content enough overall that I even feel guilty.
It's hard but I've learned to accept that there are things I can't fix. Which for a geek — I earn a living fixing people's technological problems, and several times a week I have a queue of people waiting outside my cube for help — this is very hard to accept. It's just so wrong.
On the other hand there are things I can do as a partner. I'm supportive emotionally. I play along with the current diet based on various studies, avoiding what was eaten before the last migraine out of hope it might actually work or at least produce the placebo effect for a few weeks. I spend lots of time reading labels at the supermarket to limit her exposure to the horrible lighting. I figure out dates and outings we can go on based on lighting quality, the availability of food that fits the current diet, and how easily she can pace herself.
I've become somewhat of an expert on lighting and monitors. I can't walk by a row of light bulbs without stopping to read the backs of the latest LED bulbs. I'm conversant in the spectrum of light produced from bulbs. Why this bulb is soft, this one warm, this one cool. I'm obsessed with e-ink screens, and LCD screens that allow the user to turn off the backlight. I've bought a typewriter, a high-end traditional monitor, a niche LCD screen sold without housing that can function with its back light off, a Polish e-reader running a modern Android operating system, and several books on medicinal weed...
Still, for all the effort I sometime think that what I really need to do to help my wife is sell the condo and move to some quiet cottage in the woods with good natural lighting, no monitors, and a garden where we can grow medical marijuana with high THC and CBD strains.
When I read what you wrote, it makes me sad. It sounds like living with my migraines has been hard on you, in part because you feel there isn't a lot you can do to help. And yet, when I look back over the last few years, I see that you have been central to the fixes and solutions we have found. You helped me figure out the lighting trigger and kept pushing me to be more selective with my computer monitors. You helped me find doctors and, sometimes, even drove me to appointments when I was too migrainey to drive. When I needed to make major lifestyle changes that affected you, too, you were supportive both emotionally and, gulp, financially.
And then, there is the help that comes from knowing that you've got my back every single day, in every way you can.
So when I think of you and my migraines, I think of you as a very real hero. You made something that was at one point nearly unbearable, bearable again, and then went the distance by my side to help keep those worst days far away.
Do you feel like living with the burden of my migraines in your life has changed you in any way? Has there been anything positive about it for you? For us?
I'm also curious whether you feel like you got bait-and-switched. When we first met, I didn't get migraines. You fell in love with a healthy person. Now, I do. How have you adapted to that? How do you think our partnership has adapted to that?
I don't feel the migraines really have a positive side, but I feel that having you in my life is a positive force. Certainly I'm happier married to you than I was before I met you.
When I met you you didn't get migraines (or at least we didn't know they were migraines), but you were having them regularly before we married and I had accepted before we married that they could get worse than they have so far. If anything, the migraines have led me to love you more. I've gotten to see your strength, and watch you love me and try to do what was best for me despite the migraines. A lot of people couldn't be such a good person despite the challenges you faced.
What about fun? Is our marriage fun enough, in spite of everything?
Yup we have lots of fun. Maybe we should go to a movie and eat out tonight.
OK, but only if I get to sit next to you.
Last question: if someone came to you worried because a loved one's migraines are getting really bad, what questions would you ask? What advice might you offer?
Well I would first talk about:
- What triggers they know about, and to be sure they've considered the full range of triggers. Food, light, sleep, caffeine, other pain...
- What sort of lighting they are using including monitors, laptop, and tablet/phones. Many LCD screens have fluorescent back lights, and some LED screens flicker in power saving mode.
- What drugs they are trying, and have tried. How often they are using them and if medication overuse is a factor.
- What their doctor is like. Most doctors at best have only a couple of drugs they prescribe, and aren't willing to be adventurous, looking for alternatives if the side effects are too much or the drugs simply don't work.
As for the rest, I would suggest they just be supportive, and accept that this is a moment in time. It will not always be this moment. The important thing is to stay present with their loved one when they are unable to do things, and try to let things be how they used to be, as much as possible, when they aren't having a migraine.
Hope for the Future
More Migraine Island!
- The Rules on Migraine Island
What we can expect while we're stuck here.
- Life in the Shadows
Ever wondered how living under siege *really* feels for someone else?
- Tending the Body, Tending the Mind
Migraine can be transformative. It's even possible for that transformation to be positive.
- A Partner's Perspective
...or, Wait, She's Married Through All of This??
- Hope for the Future
How do we move forward from here?