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In this corner…

I don’t know about you, but I’m getting tired of being my own advocate. Like many of us who suffer from Chronic Migraine, I am constantly tracking down new treatments, pleading with insurance companies for proper drug coverage and calling my neurologist – who forgot I was holding for them today and went home with me still on hold.

As someone who has never had a chronic condition before, I had no idea how much time it takes in your daily life – not just to suffer with it, but to seek relief from suffering. Things I thought would be a no-brainer, like, “of course my doctor’s office will ensure that my Botox is done every three months” become asking my doctor for the third time if his office has submitted my request, only to discover that they haven’t. Having to watch my diet, monitor how I’m feeling to make sure I don’t trigger an attack, do my stretches, go to bed on time, take my medication on time, breathe, not make my pontail too tight, wear my sunglasses and, did I drink enough water today?

The hardest part, or the saddest part, of advocating, is the advocating to friends and family. Although they may not mean it, I am made to feel like I have to prove how hard I am working to get better and how sick I actually am. I have to run the list of things I’ve tried to every new person I have a conversation with about my condition, as they’re convinced I’m clearly not doing it right. With my family, there are several members who have made it clear that I’m just weak and not trying hard enough. Of course, they’ve never experienced one migraine, let alone wave after wave of them, but they’re sure they would do better. They don’t believe the seriousness of it – like when I crashed my car into a pole and was convinced my vertigo aided it, a friend, whom I respect, chided me for being dramatic – as though I’m enjoying this. Just because you can’t see the incredible head pain, nausea, vertigo, crippling depression, sensitivity to light, sensitivity to sound, body aches and extreme fatigue doesn’t must mean I’m just imagining it. Or, doing it for attention. I mean, what a depressing and exhausting way to get attention.

My mother, whom I know if genuinely trying to help, was lecturing me on how I should tell my doctor this and that, and, I stopped her. I told her what she could do to help me are things that don’t involve pushing me or making me feel like I’m not trying hard enough. I asked her to please do her own research and make calls on my behalf. Today, she did and I was pleasantly surprised.

So, to my fellow self-advocates, I send prayers of strength, because until there is a cure, we’re all going to get a lot more practice being in our own corner.

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

  • ccheneve
    4 years ago

    Im only 17, so I’m still on my parents insurance (specifically my mothers public school health insurance). I cant get access to a lot of treatments on account of being under eighteen. I always have to fight with my parents to get medication or scans. I have no idea how to deal with insurance, but i know about family and friends.
    They all think Im just “being a teenager” and complaining but I am always in pain. I’ve had the same headache for more than a year, eventually my story became unbelievable even to my early supporters. Ive stopped complaining or even talking about my migraine unless its urgent. I know they dont believe me and it makes me ashamed. I dont want them to think im a liar but i need help and I dont know how to get it.

  • Anne author
    4 years ago

    I am so sorry 🙁 Migraine is a very real health condition, but there are some great medications that can help – for me, it’s Relpax. It will knock the head pain and nausea out, but the fatigue/light-smell-sound sensitivity/body pain is still there. But it means I can function. I know it sucks, but keep going until you find a doctor that takes you seriously. I don’t know why people are so hard on migraine sufferers – it’s not like we want to be unable to function, but if you’ve never had a migraine, you have no idea how painful and disabling it is. We’re all here for you.

  • zona
    4 years ago

    Thank you for sharing this story. I have been a migraine sufferer since age 12, but 5 years ago had a cancerous tumor removed from my cervical spine which was causing terrible occipital migraines. I’ve since had horrible migraines almost every other day and have tried too many options to “cure” them, to no avail. I logged into this site to find other people like me, who understand the pain and agony it causes in everyday life. I empathize with every comment on this post and I only wish we could find a cure for this disease.

  • Objective Medical Evidence
    4 years ago

    I started swimming my first lap of nine like I do every morning. I was tired, stiff, foggy. I finished half a lap and stopped. My head felt…. cloudy. The blue haired ladies (the old ladies with perms and blue hair) came over and asked if I was all right. I didn’t understand. They said my head was sagging, drooping and that I had been there a long time. I had just stopped there for a second, I thought. I reached for the ladder. My right arm, my right leg weren’t working very well. I managed to get out of the pool. I had a severe limp. The side of my head was “swirly”. I made it home. I called my doc. Told them what was going on. They said if I went to the ER without authorization, they wouldn’t pay for it. (kaiser permanente). I waited. and I waited. It was a thursday? They called back Friday. Said the doc wanted to talk to me STAT! I needed an MRI,… STAT! soooooooo I waited and waited and waited. I called kaiser four times over three days. Are the MRI people going to call me? Are you going to call the MRI people? Long story short, no one local “was available.” In reality, no one would do it for the kaiser rate. I called Portland 50 miles away. They said come on in. I drove 50 miles away, 1 week later for my MRI. TWO MONTHS LATER I finally got to see a neurologist who told me I had a “complicated migraine event”. Basically a stroke without the scar tissue. I talked to two lawyers about malpractice who were eager to take me on until I said kaiser permanent. They both then said ” I can’t help you” and dismissed themselves. Is this place the mafia?

    Folks, things are getting worse for us. Obamacare is simply medicare for the masses. Medical rationing is real and it is upon us. Near as I can tell, there is no real advocate for us. And if there was, they would be powerless with the current environment.

    I got angry. Angry at the poor pain control methods. I was referred to psych for a mood disorder. Getting angry is a mood disorder now. After six years of “therapy” my story hadn’t changed. My pain hadn’t changed. I was given many drugs. Many psychological drugs. In the end, it was determined that I did not benefit from psychological treatment for pain issues. When I hurt, I’m in a bad mood. When I don’t hurt, I’m in a better mood. Funny, I think that’s what I told them day one.

  • Cedar FireFly
    4 years ago

    I have had migraines since I was 18, im 38 now. I was alone for the first 5 years struggling to figure out everything on my own. I met my husband when I was 24. My migraines became chronic in 2005. I was in and out of the E.R. so much I thought I was going crazy and my husband didnt know what to do. But he stuck up for me begging the doctors to something or anything to help me. He had nothing to go on but what I told him and the doctors. So I began doing research, searching for doctors, getting referrals to see specialists, Looking up drugs and treatments that might help, asking for tests like MRI’s and sleep studies and I educated my husband as well as myself. Knowledge is power when you feel so helpless but patience is the key even if it really sucks to know that. Every time we move I have to start over again. New tests, more referrals, trips to the E.R., new drugs, frustration!!!, telling your story over and over again until your sick of explaining your self! We just moved from Michigan to Kentucky 7 months ago. I have already seen 2 neurologist, a migraine specialist,a therapist, a psychiatrist, a pain clinic, and have had 5 CT scans, a MRI of my brain and neck, and I have my 3rd sleep study done next week. In 2009 when I got SSI we were told that it might benefit us to refer to my husband as my advocate. In doing so he can give objective information on my health and well being in a first hand account. This has helped some. I still get called a drug seeking patient from most doctors when I meet them for the first time. And to be honest that hurts the most. Im looking for relief not to get high. The pain meds make me sick how is that any fun at all. And this last move has been hard because my HMO will not provide a ride to my appoints or to the ER with my advocate, I am forced to go alone. So I have had to learn to speak up for myself now. My husband and me sit down the day before a appointment and figure out what I am going to say to my doctors word for word. I also write all my questions down, with my current meds, and allergies and anything that other doctors have done for me since we last met providing full disclosure, this way no one can say im hiding anything. Never give up trying to keep on learning. If you don’t like your doctor find a new one(that’s how I ended up leaving my nueroligist and migraine specialist I was sent to first. I am blessed to say I love my new neurologist). Being proactive is a necessity with any chronic condition if you want the best care possible.

  • Jkr
    4 years ago

    I have had migraines for 18 years now. I’ve had them through the most crucial time in my life. My 20s and 30s. I’ve watched friends stand by me and friends ( who aren’t) leave me. And now I’m going through a divorce because my husbands family is convinced I manifest them or make up how bad they are in order to go to the er, because that’s what I love doing at 3 am. They have said it so much he believes them now even though every single dr has explained otherwise. It’s exhausting defending what works and its exhausting defending what doesn’t, what you’ve tried and what you are trying to do. I’m trying to learn to just say yup and bite my lip. Deep down I know this is just apart of me. Take it or leave it. The last 2 nights I have sat with my 3 yo in a dark room holding his hand because he was suffering from his first migraine. So awful to watch on the other side. The great thing is we are all here to support each other.

  • Kim Leonoudakis
    4 years ago

    Anne, it is horrible feeling so sick and having to advocate for yourself. Since I’ve been doing better I am trying to be an advocate for other sufferers. I don’t think sharing the study results will help because unless someone has had a migraine they just don’t get it. Luckily, I have a supportive husband and friends. I’m trying to help by volunteering my skills at a non-profit to get my story heard and raise more money for migraine research. Good luck Anne! Kim

  • Jkr
    4 years ago

    Kim where do you live? That’s awesome! The stories are so important! I’ve been asked to start a migraine support group in Los angeles because of my story as well. We don’t have any. Once my son is settled with school and my divorce is finalized that will be my next leap. What non profit are you apart of?

  • tmarlin
    4 years ago

    I am soo tired of The Migraines RULING my life too. Making sure I take my meds, keep my journal, drink water, don’t get upset, watch everything I eat. I can’t do anything, have NO FRIENDS left, miss out on family outings. And people turn their nose down at you because they just think you don’t want to come. And the depression. That’s all I’ll say. I could keep going. As you can tell I’m having a very ruff time right now no relief. Please pray.

  • Jkr
    4 years ago

    How long have you been suffering from these? You have to find a place that your ok with people not getting it. It’s hard and takes years but it’s heslthier. They just won’t. And your friends were not your friends. I’ve watched the same happen to me. I was never able to keep plans and was accused of just wanting to stay home to be with my husband. No, I really wanted to go out! Those friends are long gone. And my friends well, are limited but that’s ok. The ones in my life get it because they have stuff in their life too. The depression and guilt are the worst. I used to cry for days when the migraine would go on for days because I couldn’t spend time with my family and my son. It killed me. I just recently found a harmonious balance with meds and underwent breast reduction surgery to help with my neck muscles that were causing migraines every day. I’ve had to pull apart each type of migraine because I have so many different reasons as to why I get then and then attack why I get them. It’s a work in progress but I’m improving. I found meditation really helped me. Even if it’s two mins of just breathing to make you remember to slow down and not stress. Please know, your not alone reply back any time, I’ll answer.

  • Nonster
    4 years ago

    Yes I tire of my life being “everything migraine”. From the journals I keep of what I eat, what meds I take and what time, HA days and all that entails….yes it is very tiring. And we have all lost friends and family over our disease. I have 2 friends who have stood by me out of 8 that I counted as good friends. Family is another story in itself. Be strong, stay on course and we shall conquer.

  • Mommaof24Christ
    4 years ago

    Very well said! This is such a relentless disease, and so many people just cannot understand the exhausting nature of the beast. But, we cannot stop advocating for ourselves because no one else will ultimately do that job for us. Maybe they will help us, though, if we find someone to help, but that is all we can hope to count on.

  • Katie M. Golden moderator
    4 years ago

    Anne,
    Well said! For some reason when I stopped working, I thought that my neurologist would magically give me a list of all the things I should be doing or trying. I quickly realized I had to take matters into my own hands. All the paperwork alone is like a full-time job!

    As for family and friends, the best advice I can give you is to send them articles or other people’s stories about how Migraine has affected their lives. Sometimes when the info comes from a third party, people are more willing to listen and take it seriously. You could share our most recent Migraine in America study. Numbers don’t lie!
    http://migraine.com/blog/view-the-results-of-the-migraine-in-america-2012-study/

    Best wishes!
    -Katie
    Migraine.com Moderator

  • Luna
    4 years ago

    ” tired of being my own advocate”
    Yes it is tiring. But we are the only ones we can depend on.
    People in our lives can be very disappointing because no matter how much they may know about migraine until they experience our crazy to them symptoms they can not relate.
    I am so thankful that God sees me through every day.

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