Feeling Useless? Migraine as a Disability

Migraine.com recently asked community members to finish the following sentence, “Migraines make me feel___________________.” You should check out the responses — they poignantly capture how devastating it can be to have migraine. But this snapshot also tells us something about how people with migraine think about themselves.

migraine feeling

For example, the most frequently listed response was “useless.” It’s intriguing that the most common adjective in this word cloud is relational. “Useless” isn’t about pain or emotions–it’s about the way that people in the migraine.com community assess their social worth. When a migraine strikes, it’s hard to get to work, take the kids to school, or put dinner on the table. This is the burden of migraine. It’s the way that migraine shapes our lives.
A number of organizations have taken this into account by describing migraine as a disability. The move towards understanding migraine as a ‘disability’ began in the late 1990s with the development of the Migraine Disability Assessment (MIDAS) score, which is a tool that measures how many days a person loses to migraine-related disability. Some of you might be familiar with MIDAS — a lot of doctors use it to track how well their migraine patients are doing. It makes sense for doctors to ask their patients about disability, rather than pain. Pain is invisible and subjective. Days lost to disability can be counted.

In 2001, the idea that migraine is a disability received a real boost from the World Health Organization (WHO), which listed migraine as the 19th among all causes of ‘years lived with disability.’ WHO’s assessment was made possible by a calculation that assumes that the disability associated with having a migraine is equivalent to being a paraplegic. That is, the WHO presumes that when you have a migraine, you can accomplish nothing.
So as much as it stinks to feel “useless” when you have a migraine, this might be an effective way to communicate to others how migraine affects your life. Describing migraine in terms of disability, rather than pain, allows you to emphasize the objective burden of disease, rather than the subjective feelings associated with migraine.

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 (30)
  • Shawna Coon Lovato
    7 years ago

    I began to write that ‘ you have”no idea”how right on your article is’ but then I realized who I was writing to and of course you know. This disease is and has been disabling to the point of losing my job and driving me over the edge! Mine are the chronic, aura, stroke like symptom migraines that over the past 30 years have worsened and are now “all consuming”. Disabled doesn’t begin too describe my life. In bed over 20 days every month

  • Shawna Coon Lovato
    7 years ago

    I began to write that you have idea how”right on”

  • Robyn Wacha-Flint
    7 years ago

    I’ve been getting migraines for 2 years now. they are severe enough now where I’m getting scared. the drs keep prescribing meds that work for a few months and then don’t’ and I cant’ take it anymore.

  • Lloyd Conn
    7 years ago

    I went years before realizing it was a migraine that was making me feel so aweful. You see I very rarely get the headache. Just the aura. And now I have come to find out that I have attaxia with my migraines.

  • taralane
    7 years ago

    Alone. What happens when the caregiver for the person intractable migraines is the person with the intractable migraines? This is my question.

  • Lily Walters-Davis
    7 years ago

    After I’ve had an attack, I have what I call a “shadow” headache the next day. I’m drained and tired, but am able to go to work, but have that pain that is lingering, making me wonder if it’s going to attack again or not. Yesterday I spent the day with my face packed in icepacks, fans on, and wearing dark sunglasses to make it to the bathroom. I’m ‘thankful’ that I didn’t have to work yesterday.

  • Mandy Spencer
    7 years ago

    Nobody understands when you have migraines 5 out of 7 days a week it is hard to function.. The days when I finally can get rid of them I have no energy to function…. It is an illness that unless you have one you do not understand the impact they have on you’r life… 🙁

  • Mandy Spencer
    7 years ago

    I agree.. It really is hard to have someone understand what it is like if they have never had them… My hubby only is concerned with his pain and less about mine.. I’m sure he thinks its in my head….:( It’s not my imagination when I started getting them in 4th grade….

  • Cindy Shackleton
    7 years ago

    I am glad we have some many people who know and understand what I am going thru as well as all of the other people that are on here.

  • Mandy Spencer
    7 years ago

    So good to know I am not alone and someone understands my misery…

  • Amy Warrick
    7 years ago

    Devastating… that’s what migraines are. They take and take and take. Useless would describe how they make me feel. Unable to do anything. It’s good to know I’m not alone.

  • Lily Walters-Davis
    7 years ago

    I like how you have put it Amy. You have hit the nail on the head for me, too. I feel useless and worthless. Everyone wants me to eat. Sorry, no can do!! I go all day before I’m able to finally try dry toast. If that stays down, then I know I’m on the home stretch. And no, you are most definately not alone.

  • Barbara Prendez
    7 years ago

    It stops your day. No work, basic care, feeding kids, fun, life, nothing…just pain, nausea and the wish that it will all be over soon. Repeat two days later.. What are we supposed to feel like? I hate it when people tell me they NEVER had one. A neurologist told me that people with migraines are smarter. Really? that did nothing for me. He told me it’s all genetics….thanks, I have had them since I was a teenager, my father had them, my sister has them, my cousin has them, my grandmother had them. I could have saved money on that diagnosis. It’s nice to have other people here that can relate and not feel like a hypochondriac.

  • Lily Walters-Davis
    7 years ago

    Thank you for such an eloquent comment. My Aunt has them, my Mother has them, I have them and 2 of 3 of my children have them. Of all of the things I could have passed on to my children… I wish it could have been something besides migraines! They completely steal an otherwise beautiful day.

  • Louise M. Houle
    7 years ago

    So much of our self esteem can get wrapped up in what we DO (for a living or otherwise). So when we find ourselves disabled to varying degrees by chronic migraine combined sometimes with other comorbid conditions or illnesses, we have to shift the focus at times from DOING to just BEING. Not easy. I finally feel I’ve adjusted to being on disability in part by focusing on projects that help others (like running a migraine support group), and by slowly re-integrating activities, within reason, that are creative and make me happy. Be well, everyone!

  • Laura Marie
    7 years ago

    No one that hasn’t experienced a migraine can understand how debilitating they are. Weather affects me badly, when it rains,it kills me.

  • Lloyd Conn
    7 years ago

    Weather is my biggest trigger. A front came through yesterday and here came the migraine. Spent a lot of the day trying to sleep it off. There is not much else you can do.

  • Amy Warrick
    7 years ago

    Something as simple as rain, a cold front, a food, can stop your day/week. It’s so hard sometimes.

  • Mary Corral
    7 years ago

    SOME people do not understand the ILLNESS….It is such that it controls your life…and you get to the point where you just don’t have a life…..ONLY those who have this ILLNESS can truly understand. IT is a disbility!

  • Lynne Schultz
    7 years ago

    Yep, I feel every one of those things on the list, but “useless” is the big one-hard to feel any self worth when you are having 2 or 3 migraines a week 🙁

  • Hanako Da Costa
    7 years ago

    Having a migraine, sometimes I feel guilty to be disabled… We are rarely understood. however, it’s soooo painful!

  • Hanako Da Costa
    7 years ago

    Lily Walters : Hi Lily, I usually take Sumatriptan which is, as you may know, special for migraine. It works approx 80% for me. I always bring with me this one and doliprane (I don’t know how it’s called in US since it is an European name). I see it depends largelly on the person which medication works but I know that I must live with that. It’s a pain in the neck to take an appointment, reserve an events sayming myself I could be disabled that day. Also I feel almost guilty to say my family (especially my kids) “I have a migraine” on Sunday morning…. Let’s survive and keep our life quality as confortable as possible. This page gives me a consolation since I can share my experience and feeling with others.

  • Lily Walters-Davis
    7 years ago

    Hanako Da Costa: Hi!
    It is so refreshing to talk to people who understand where I’m coming from. My mother takes “Zomeg”(sp?) and is fine within 15-30 minutes, but i’m already so much other medication that I dare not try it. It is also very Expensive!!
    I feel like I’m carrying this terrible load of pain in a box to work with me and the box is so full it overflows so others see the result of what I go through. I get pale, the fluorescent lights are horrid on my eyes, and the sounds… OMG!!
    I just want to curl up behind the counter and die a slow painful death.

  • Hanako Da Costa
    7 years ago

    It’s exactly that. These days, I’m in that period where I wake up with a pain. But I gotta work. People can’t understand that a “SIMPLE” headech can cause a such disability.

  • Lily Walters-Davis
    7 years ago

    Yes, they are sooo painful! If bothers me when people say they have a “migraine” and yet they are laughing and working, like nothing is wrong. Sorry, a little hard to believe they are experiencing a true migraine. Mine completely disable me. What is really bad is if I wake up with one, which is generally how they start, and I’m scheduled to work that day, I HAVE no choice. I have to go in. Customers have no clue and are so rude because i’m not my ‘normal’ happy-go-lucky self. Nobody understands.

  • Cindy Shackleton
    7 years ago

    is that ever so rtue that we are rarely understood……..do that daily with people who never had/have a migraine Ever

  • Deb Warren
    7 years ago

    I wish this could be classified as a type of disability. It would make things easier for those of us who get the debilitating ones that last about a week at a time, and get The Look from everyone from the boss to the spouse. Luckily, my husband has seen how mine lay me out, and is incredibly helpful, but still, it’s impossible to drive or function normally when your eyes don’t work right because your head is erupting, and everything is making it worse. Then when it’s finally on the downslide, the slightest thing will trigger a relapse.
    The worst part is when the doctor asks “on a scale of 1-10 how’s the pain?”….well, since every time I get a new migraine I swear the pain is worse, I can’t give you a 10. How about a 8 to 9 and growing?

  • Purnendu Prabhat
    7 years ago

    People don’t consider our illness. Is there a law that justifies that “I am having an attack and cannot come to work.”

  • Gretchen Rautman
    7 years ago

    Yes, there is a law, it’s called the Americans with Disabilities Act, or ADA. You need a letter from your doctor explaining that you do get disabling migraines, and then your work will have to make “reasonable” accommodations for you.

  • Mary Corral
    7 years ago

    I know how you feel…..believe me your not alone! Hope you feel better.

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