5 Struggles I Face With Chronic Intractable Migraine

My whole world changed when I was diagnosed with chronic intractable migraine at the age of 16. I began dealing with struggles I never even imagined I’d have to deal with before. Chronic intractable migraines are often misunderstood, so let me provide a bit of background as to what that diagnosis means.

Chronic intractable migraine means someone has over 15 migraine days a month, and they are generally resistant to treatments or medication. Since my diagnosis, I’ve overcome so much. I climbed mountains of problems and hiked through deep valleys of sadness. However, I am still coming to terms with my diagnosis and continue to face many struggles I have yet to overcome. Many people don’t see the struggles I face because of my chronic intractable migraine diagnosis, so I’ve decided to share five of them:

1. Stigma and lack of awareness about what it really means to have chronic intractable migraine.

In society, migraines are largely thought of as the same thing as headaches. I’ve had strangers, acquaintances, close friends, parents, and even doctors refer to migraines as simply “headaches.” But calling migraines “headaches” completely belittles what I’m going through.

A headache is often seen as simply an inconvenience you can address by taking over-the-counter pain medication. It’s thought to be very common, not serious, and generally not a big deal. But a migraine is so much more than just a headache. It’s debilitating and causes a very long list of symptoms other than pain. These symptoms can include nausea/vomiting, dizziness, trouble speaking, photosensitivity, sound sensitivity, vision alterations, and so on. Migraines can be terrifying and are serious.

However, even if the correct term, “migraine,” is used in conversation instead of “headache,” people unconsciously (or sometimes consciously) still belittle my condition. The number of times I’ve had healthy people make comments to me like, “I totally get it, I had one migraine one time” or “I get migraines all the time, they’re not a big deal” or “my [insert any relative or person they know] gets migraines and they are just fine” is absurd. It makes me, and I’m sure others with conditions similar to mine, feel like everything we struggle through is ignored and not even recognized.

Sometimes I believe we need a new word for a “migraine” to really escape the stigma behind it.

2. Feeling misunderstood by nearly everyone because of chronic intractable migraine.

Partly because of the stigma around migraines, and partly because I have abnormally severe migraines, I often feel like I’m never understood fully. Close friends understand I’m in pain sometimes, but they don’t get how often or how severe. My parents get that my pain is severe, but can’t comprehend how much it impacts me or how hard it is to continue through life with migraines. My doctors are aware of my diagnosis but have no idea what my day-to-day life is or how difficult it is. Even my boyfriend, who is probably the closest to me, can’t comprehend the mental or physical toll I go through. Don’t get me wrong, some people try to understand, and I greatly appreciate that, but I feel stuck in the fact that they can’t ever quite get to full understanding.
I crave the feeling of someone finally understanding me and my chronic illness. I really need someone who is going through something similar to me to talk to. Yet I’ve found that challenging due to the crushing anxiety that attached itself to me at an early age.

3. Feeling like I’m not “sick enough.”

If there’s one common saying I hate the most, it’s, “Other people have it worse.” It may be true that others have it worse and it might be seen as a reassuring statement by some, but it’s extremely unhelpful for most people with chronic illness. So what if someone has it worse? It doesn’t make my struggles any easier or lesser. And how do you really know they even have it worse? Do you know that other person’s life? Who is to say one person’s struggle is worse than another’s?

When people say that someone has it worse than me, it often makes me feel like I’m just complaining, exaggerating, or whining about my situation — when in reality, I really am truly suffering and struggling. I never feel like I’m taken seriously and it adds to my feelings of being misunderstood.

The other part of this is that I already compare myself to others. I see people in the hospital for months at a time, or someone in a wheelchair, or someone with many diagnoses, all with long unpronounceable names and automatically compare myself to them. Sometimes I don’t believe I deserve to even call myself sick or consider myself a part of the chronic illness community because I perceive their circumstances as “worse.”

Of course, this isn’t true. All should be welcome in chronic illness groups, no matter the severity or type of condition they have. But people constantly telling me others have it worse prevents me from truly accepting that do have a serious condition and I do count as part of the chronic illness community. I wanted to fit in somewhere, though, so I’d force myself to fit in with the “healthy” people. This caused a huge identity crisis within me, and took a huge emotional toll on me. It also made me push myself past my limits until I crashed and burned countless times — all so I could keep up and fit in with the average person.

4. Accepting that there is no cure for chronic intractable migraine.

My doctors were all very hesitant for most of my life about telling me there is no cure. Often they would talk circles around the topic, never directly telling me that chronic intractable migraine doesn’t yet have a cure. This made me and my parents believe I would get better any day. That I’d be cured any day. Because of this, I was encouraged to set goals in my future as if I’d have no chronic illness anymore. I was expected to keep up with “healthy” people, so I wouldn’t be behind when I was cured. The idea of a cure became a safety blanket I firmly held onto.

In reality, though, there is no cure for my condition. At least not yet. There are ways to manage chronic intractable migraine for a better quality of life, but I will probably never be free of it. So most of the goals I fought so hard for were not going to be achievable and I often couldn’t keep up with “healthy” people, no matter how hard I tried. I had to give up the idea of a full-time in-person job, I had to give up activities I love, and worst of all, I had to give up my idea of independence, which was heart-wrenching. I still grieve the things I’ve lost.

5. Recognizing my limits and respecting them.

I often don’t respect my limits or even know what they are because I don’t respect myself as someone with an illness. I think this is mostly because people around me don’t take my illness seriously, so I begin thinking, why should I? If everyone is telling me migraines are no big deal, why should I plan my life around them and ask for accommodations? Why not push through them?
But that’s a mistake because every time I do push through my migraines I inevitably crash and burn. Then I end up even more unwell and I get mad at myself. It’s a horrible feeling.

This is still something I’m working on: respecting and accepting my body as a body struggling with chronic illness, being gentle while I find my limits, and not pushing past those limits.

I will always have struggles in life with chronic intractable migraine. I am not perfect and I certainly don’t have everything figured out — but that is OK. It’s OK to be struggling. It’s normal. I try to tell myself that every day. Once I conquer these current struggles, I’m sure new ones will pop up. I do believe, however, that I have taken a huge first step by being able to acknowledge my current struggles and share them. I believe the first step to coping is understanding why you think what you think and do what you do. Most importantly though, I will never give up fighting the struggles I face with my diagnosis. And to anyone out there who struggles because of their chronic illness, never stop fighting.