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The Emotional Cost of Disability

My migraines were so bad during the year I lived in Boston that I didn’t leave the apartment for weeks on end and spent consecutive days in bed, thrilled if I was able to shower once a week. My husband was working long hours then coming home to care for me, drive me to appointments, and manage all the household chores, cooking and cleaning.

Invisible IllnessWe were desperate for help and knew no one in town we could ask to lighten the burden. A friend researched home health aides and my husband called around for details and price estimates. He settled on one company he liked and asked me to make a list of tasks we needed assistance with. I didn’t do it. Even after he brainstormed a list and asked me to review it, I wouldn’t give my input. I wanted to reduce his load, but the price of hiring a home health aide was more than I could pay. The hourly rate was high but not unmanageable (especially because we weren’t spending money on restaurants, travel, or any other entertainment) — the high price was the emotional cost of admitting that I was housebound.

Two years after we discussed hiring someone to help us out, my husband and I have moved to Phoenix, my health has improved somewhat, and I can look back at that time as The Worst Year of My Life. I am still grappling with a higher level of disability than I would like, but I’m able to admit to it now. I did so last week when I asked my headache specialist to sign the form to request a disabled parking permit from the state.

The idea of using a disabled parking permit challenges my view of myself as a fundamentally healthy 35-year-old. But I remember going out to get groceries in the searing heat of last summer: Searching for a tree-shaded parking place, putting shade screens in the front window and cracking all the passenger windows so the heat won’t build up. Seeing the sheen of heat covering the parking lot. Walking across the black asphalt, soft with heat, while the sun radiates maximum UV rays from overhead. Arriving in the store and basking in the cool air, which chilled my sweat-soaked skin. Even though it only takes a few minutes, this exposure to the asphalt oven that is Phoenix in summer almost always triggers a migraine. I can’t subject myself to that for another summer when there’s a solution that will allow me to park close to the store’s entrance — if only I will swallow my pride.

To the rest of the world, I look perfectly healthy. To myself, I do not feel like someone who is sick enough to require a disabled parking permit. And yet I do. My heart quivers a bit when I open my eyes wide to this bald truth. But perhaps paying the emotional cost of admitting my disability will allow me to work around this fickle illness so that it is ultimately less disabling.

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

  • msruff
    5 years ago

    There’s nothing shameful or embarrassing about needing a parking sticker. I’ve had one for years, and it doesn’t make me any less of a person for having it and using it. We have to make a lot of compromises in our lives, and we should consider this just another one. On my good days, I park wherever; on my bad days, I use a handicapped spot. If someone says to me, “Well, you don’t look disabled,” I reply, “Well, you don’t look stupid, so I guess we’re both wrong.” Consider it just another hurdle you have to overcome and then MOVE ON. There’s no reason to let it hobble you any more than the migraines are already doing.

  • jkrudolf
    5 years ago

    This article resonates with me on a variety of levels. Admitting ‘disability’ can be humbling and painful. We live in a culture that worships a ‘can-do’ attitude, that applauds those who overcome whatever odds. When we admit we need help because of illness or disability we can be perceived as failures, weak, not trying hard enough, giving up. People with some diseases who have the opportunity for healing are deemed successes when they fight the good fight and overcome. People with chronic disease for which there is no cure are often dismissed as less than. Because of this culture of ‘positivity’ it becomes all the more difficult for those with chronic and debilitating illness to be heard and to be seen.

    If we use the word ‘disabled’ some look at us with contempt because our illness may be hidden. Thus, it goes with the territory that if we use a disabled parking spot (even with the requisite permit) while appearing ‘normal’ we are suspect. It brings up that, “your not really disabled” or
    “your not disabled ‘enough'” i.e., “but, you don’t ‘look’ sick.” I never question anyone’s use of a disabled parking spot because I understand that I do not know what that person is coping with. Whether it is chronic fatigue syndrome, fibromyalgia, migraine, mental illness, lupus, multiple sclerosis….the list may go on. The point is-we do not know and should not judge.

    I would hope that we may all be supportive of each other-particularly on a thread where we come for support and understanding. It is so difficult to admit ‘limitations’ in a society that celebrates those who seem to defy the odds (and how wonderful for them!) while rejecting those of us who have to set boundaries in order to best care for ourselves. That’s why I am so grateful that people do share on this site-it lets me know I am not alone in a sometimes unforgiving world.

    love and appreciation to each one of you.

  • B. Morebello
    6 years ago

    Good for you! I’ve been thinking of doing the same thing, but I’ve been too ashamed to admit that I need help, which is just ridiculous. You’ve inspired me to take better care of myself. Thank you thank you thank you!

  • kathyhorton-bishop
    6 years ago

    I’m right there with you…my husband passed away April 2012 after a battle with cancer….since then both of my teen daughters have moved out because they don’t want to live with me because of my migraines….After a very scary day when I made about 15 phone calls before I could find someone to drive me to ER for fluids and meds….I had to admit to myself that living alone in rural community wasn’t something I was capable of doing anymore….so now I am moving 1200 miles away to live with a very close friend who can help take care of me when I can’t….It was hard to admit….and very hard to leave my home of 4 years for this reason..I have to trust God has a plan for me…

  • brianne
    6 years ago

    Good for you, Kerrie. I, too, suffer from migraine disease and have had to alter my life drastically due to it. I am also on Disability, however, it is probably a little bit different since I live in Ontario Canada, but overall, it has helped me out tremendously with paying for prescription medications, managing finances, working part-time, and handling stress. The important thing to remember is to ask for help and not to be afraid/ashamed to ask for help when you need it. People love to lend a hand!! Sometimes all it takes is an “excuse me, could you help me please?”

    Also, I’m not sure about there, but here we have groceries available online and can be shipped weekly, bi-weekly, (on a regular basis), as well as Shoppers Drug Mart (Pharmacy) will deliver anything you need free of charge. Take advantage of it! It’s there for people like us who perhaps shouldn’t be driving with migraines or out in that weather and possibly triggering a migraine.

    I know there are a lot of people out there who do not understand what a migraine is like, but I am not one of those people. I completely understand what you are going through, what you have gone through, and what you will continue to go through. Take care of yourself first. I’m proud of you!

  • Kerrie Smyres moderator author
    6 years ago

    The last sentence of the post is complete, it just doesn’t have a period. 🙂

    Thank you for the supportive comments. This was a difficult post to write. I appreciate those of you who recognize that everyone with migraine has a different experience and that migraine can be severely disabling for some.

    I got a lot of criticism on Facebook when this post first appeared. I use the parking permit judiciously — only when I absolutely need it and I don’t park in van-only spaces. For me, this is not just a quick way to get a good parking place. Even though my legs are not impaired and I’m not in a wheelchair, there are times when I have to go out when I can barely walk. And others when the only time I feel good enough to leave the house for groceries happens to be the middle of the day, when it is hot enough to trigger a migraine if I’m not careful.

    I’d be thrilled if I never had to use the disabled parking tag again. Until the day my migraines are no longer severely disabling, I use it respectfully.

  • BethBlue
    6 years ago

    I am confused. You say that your health has been better since you moved back to Phoenix. However, you now require a disabled parking permit because of the oppressive Phoenix heat. From what I can gather, this isn’t the first time that you’ve lived in Phoenix, so you had a reason to know what you would be facing. The southwest is a very popular retirement destination for elderly people, many of whom require special treatment for a host of physical disabilities. It just seems to me that, as a person who also has chronic migraine disease, I could sacrifice my parking space for someone who is much more deserving of special treatment than myself. What if the other person is a veteran? Could you honestly walk past that person in the parking lot? I could not. Try shopping in the evening when the sun goes down (I know it’s still hot), or shopping in the early morning.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi B. Morebello –
    You are exactly right! And what interesting timing. I was in line today and an elderly woman was cashing me out. I asked her how she was and her reply was, “I’m doing ok, besides when I think about my aching hips, I know there is someone else who has it worse off than I do – you know missing a limb or something.”

    Well, I was polite and said have a good day, but that got me thinking. Why do we compare disabilities? Why is one is worse than another? Yes, not having a limb (s) is horrible, but so is migraine. Judging and comparing is not good for migraine stigma or disabilities in general.

  • B. Morebello
    6 years ago

    Someone else’s disability doesn’t discredit another’s.

  • Ellen Schnakenberg
    6 years ago

    Hi bethblue – Needing a parking permit is actually not that unusual for some seriously affected Migraineurs. Sometimes a few moments in the hot sun – or the heat or sun specifically – is enough to trigger an attack. Sometimes patients have to trade off one benefit for a disadvantage. For me personally, I would take eliminating frequent weather triggers for needing a parking permit and a quick walk into the grocery store any day of the week. During my travels in Arizona, there seem to be a large number of permit spaces for those who need them.

    I have lost my functional life to my Migraines and although I would most likely give up a spot to a veteran who needed it and suffer the consequences, because it seems like the least I could do when they put their lives on the line for me… I would expect others to keep their opinions to themselves if I really needed that space. Sometimes we have no choice but to choose between the lesser of evils, and this case seems to fit that scenario. I’m glad you can get by without a permit. There are others here who frankly, cannot. They have to return home if a space is not available to them. They are just as disabled – sometimes more – than others. Additionally, some Migraineurs have eye damage (often as a result of their Migraines) and cannot drive unless it is daylight, and although you have some really thoughtful ideas about timing your trips, it is not always possible to do so. I just don’t want anybody feeling guilty for needing to use a permit they didn’t really want in the first place. Most I know with permits felt horribly defeated and worthless when they got their permits. It was a defining moment for them when they finally had to admit that this was the level their health was at. Terrible depression usually follows. It was not an easy thing at all to ask for, although a very easy thing for them to get due to the scope of their disabilities. Remember, we are not all alike.

  • Zev
    7 years ago

    Disability is hard one to swallow, I myself went through this a few years ago, all though my migraines were only one cog in the wheel it forced me to look at life differently. It’s been a long road back to health and productivity and only recently did I get my migraines under control (I still have two more operations). I guess my point is use this to your advantage, keep writing/sharing, use your help when you need to. And when you don’t need it…..we’ll it’s there just in case.

  • cudagirl23
    7 years ago

    I’d have to say I fully understand what you are talking about with emotional disability – some days I am willing to give in and other days I want to deny it; then the hard part of living it, try telling your 4 yr old son you can’t go outside to play because the high pressure beautiful sunny day is worsening your migraine and if you step outside you’re gonna lose your lunch. Never mind the pain. For me, disability is hard to swallow and after twenty some years, you’d think it would get easier, it hasn’t.

    But just like you said, we live one moment to the next, taking one step at a time and hope you get something done that day.

    Chin up, you are not alone – and you and I are very lucky to have loving husbands sticking through this with us. I’m with ya, girl friend.

  • Penni Friess
    7 years ago

    I’m living this now…just had my doctor sign to paperwork to begin disability…I think I’ve really only left the house to be driven to appointments in the last 3 weeks.

  • taralane
    7 years ago

    Hi Kerrie,

    Like psalm374, I would love to hear how you resolved the issue of the parking permit with your disability.

    Kerrie, admitting your disability is the first step to getting on with your life. When Whitney Houston died, and you don’t have to be a fan, a friend sent me a video of her singing a song I had never heard before called “Step by Step”. I am sure you can find it on YouTube. When you are feeling like you are accomplishing nothing, and you cannot get moving, play that song. Realize that all of us are doing that all the time. Putting one foot in front of the other every day, step by step, thinking we are going nowhere.

    After a week or two of that, we can look back and realize we have made some progress. It is a great video to watch just to remind yourself that sometimes that is what you have to do. No one is judging you, besides yourself, and you can give that judge a well earned vacation and send it off to China for a good long rest.

    This is the link to where the video is. I hope you enjoy it, and let us know how you are doing with the cost of disability. I too am dealing with the same thing, and know how difficult it is. I just moved 3 months ago and it looks like I moved yesterday!

    Whitney Houston – Step By Step
    http://www.youtube.com
    Music video by Whitney Houston performing Step By Step. (C) 1996 Arista Records, Inc.

  • psalm374
    7 years ago

    Where’s the rest of the article? It stops mid-sentence, without any punctuation at the end.

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