Embracing the migraine identity

There’s a popular saying within a lot of chronic illness communities…

You are not your illness.

But what happens when your illness starts before you’re old enough to remember it? Does it not become part of your identity?

It certainly did for me.

I don’t remember a time when I didn’t have Migraine. Try as I might, I became known as “the girl with headaches long before I could do anything to change it. Once I realized that Migraine was becoming part of my identity, I did everything in my power to minimize its influence on my reputation. For three decades, I was determined to prevent it from becoming the one thing people remembered about me. I hid the symptoms and the treatment from everyone whenever possible. I never talked about the attacks unless it was obvious that I was hurting. If someone asked, I minimized their impact. I assured people that I was driven, motivated, and capable of taking on the world with or without Migraine.

So how did I get to the point that having Migraine is what I am known for?

It took losing my dream.

I started graduate school at the 2007 fall term. Between work and school, I had no life. My husband and I knew it would be that way. We were determined to stick it out because of the potential for a dramatic pay increase. To go from Case Manager to Therapist would double my salary, if not more. That’s a strong motivator!

For two years I slogged my way through, determined to not let Migraine force me out. Through sheer willpower and the generous tolerance of many professors, I did manage to graduate. I passed my exam, got my license and accepted a position with a great agency.

I was looking forward to getting started in my dream career. It really was everything I’d ever wanted in a job, except for one thing. I kept getting migraines several days each week. Some would knock me out for a whole day. When that happened (at least once a month), I had no choice but to cancel appointments. I only got paid for my billable hours, so if I didn’t see clients, I didn’t get any money. I wasn’t in any trouble with my boss (also a migraineur), but I did miss out on some cash. That last year, I missed out on over $7,000 thanks to Migraine.

To make matters worse, the symptoms of Fibromyalgia made their appearance while I was working with this agency. So now I hurt all the time! I didn’t really know what was wrong and naively thought that an office job would be easier on my body.

So I quietly built a private practice in addition to my day job. When it got busy enough, I resigned and set up permanent shop in private practice.  The migraine attacks got worse and the side effects were terrible. Cluster attacks and fibro flares added to the nasty mix. It got to the point that I had to cancel or reschedule appointments at least once a week. It broke my heart to realize that I was no longer helping clients if I couldn’t reliably show up for scheduled appointments.

I had no other choice.

I was disabled by Migraine (among other things) and I couldn’t work anymore. I knew what I had to do, so I started the application process for Social Security Disability Income (SSDI). It didn’t take long to get an approval. I guess I really was in bad shape!

After a 38 year war, Migraine had won…at least that’s the way that it appeared.

I’d been blogging about my fight with Migraine since 2011 and pretty engaged in Migraine-related social media since 2007. I wasn’t going to just quit. After all, I couldn’t really do much else. Blogging kept me sane. Social media kept me from feeling isolated. I was becoming a recognized name in the Migraine community just because I was lonely and needed support.

About a year ago, I got an interesting email from Migraine.com. Nancy Bonk had been talking about me. They needed some new Patient Advocates.

Migraine.com – “Would you be interested?”

Me – “Sure. I’m already online all day as it is. Why not help out?”

That’s how I went from trying to hide my disability to embracing it as my identity.

What about you? Do you hide it or embrace it? How does being online help?

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 (14)
  • Katyb
    3 years ago

    Mardie, I emailed you.

  • Mardie Crucchiola
    3 years ago

    Hi kathie: It’s Mardie again. I am now convinced we have not only our age in common but my severe headaches started when I would just about to get my periods also. I always knew a couple of days before I would start because of the bad headaches I would get prior. I only thought at time it was premenstrual normal stuff. I then went into the premenopausal ages and I kept hearing they would go away after menopause. Mine didn’t they got worse. I was living in Palm Springs California and I went to the best dr. He said, let’s get MRI and put me on imitrex. I only took imitrex once in awhile but as stressful situations occurred so did my migraines. I know myself after all the years of trying anti depressants, anti seizure drugs, and all the other OTC meds, nothing worked like imitrex. I was told by Drs in Oregon I was getting rebound headaches everyday, from taking too much imitrex. In 2012 I was told I had migraines because of too much imitrex, so I went cold turkey off Imitrex. I too then was convinced if I got off imitrex the daily chronic headaches would go away. He put me on a low blood pressure pill (which I didn’t have high blood pressure) so for 8 days I went without a bad headache. I didn’t have a single headache. I thought it was a miracle, I thought it worked. Then all of a sudden 9 days went by and my migraines came back with a vegence. I called dr and he gave me a shot to last through weekend. The shot was an anti inflammatory . It did take away for the weekend. Then I started getting the headaches back and wasn’t taking imitrex anymore but I had to work still. I was taking Tylenol extra strength everyday instead of imitrex, so I thought I was okay but I wasn’t at all. The dr never told me I couldn’t take Tylenol or any OTC meds. He just said about the imitrex. By April of 2014 I was taking excederine w caffeine everyday and Tylenol extra strength. My mom died in April, my dad had died 9 months prior, my daughter who was 38 had a mid term miscarriage in September that same year. By November I had severe weight loss, anxiety,migraines , I thought I was having a stroke. By end of November I went off all OTC meds, no blood pressure pills, no caffiene, no nothing. In January of 2015 I tried everything natural. The chronic headaches never went away for more than 2 days a week. When I returned to that same dr who said I had rebound headaches from too much imitrex it wasn’t so. He was just a general dr. He’s just was going off text books he had . I then have spent tons of money on acupuncture, dentists, chiroprators, and counsellors. I then found a migraine/ headache specialist in April this year, who did say I can take imitrex but only 9 a month. Still no OTC meds at all. She has also tried anti seizure therapy and I’m still getting bad migraines . I have to pay her out of pocket which is very expensive. I’m sorry this is so long but this has been so life threatening to me. I’m here on this blog to hear other stories and to educate other victims of this dreadful no brand name disease. I feel too this blog has been a lifesaver to me. I wanted to die 9 months ago. My head pain was so debilitating I couldn’t do anything. I’m returning to my dr in September to explain I get better sleep at night with the anti seizure drugs but I feel awful all day and I still have more then 15 headaches a month. I hear you loud and clear about imitrex, it works, and it stops the bad headaches in their tracks and I can function normally,. Keep in touch with me if you want. My e mail is crucchio@aol.com. I would love to hear how your doing. I’m going down to Palm Springs at end of month to maybe purchase a vacation home again down there. What state do you live in? Don’t hesitate to e mail me . Hope to hear from you.
    Mardie

  • Katyb
    3 years ago

    This is in response to Mardie as we are the same age and seem to have similar history with our migraine journey. (BTW, I have no idea why my sign in name has numbers and letters when my real name is Kathie??) Oh well………. Anyway, I have been friends with many people who went on the “migraine preventative” route and 100% of them told me not to go there! They took Topamax and many other preventatives only to feel as if they were in la la land. The Topamax was especially brutal on 3 women I know. They were so out of it and seemed like they had had a stroke. When my doctor told me he’d like me to try it I told him that it was not going to happen and explained to him what I knew. He gave me the typical, “not everyone responds the same way to drugs.” Ok, but I’m not fooling with anti-epileptics! So, he tried a blood pressure medication (I already have normal to low BP) and I nearly fainted. Then, he tried the anti-depressant route – I was constantly trying to keep food down – can’t take that, either. And, that was the lowest dose possible and I was to build up to a higher dose! UGH! So, here I am still on Imitrex and OTC pain meds and an occasional Fioricet. We have many headache specialists in our area, but I don’t want to go there because I KNOW they’ll call for an MRI and then it’ll be the old preventative route of trying all kinds of drugs. Been there.
    I have a super part time job 3 days/wk. and volunteer at a cancer hospital one day/wk. Other than that, socializing is usually with just my husband going out. Friends all want to drink so much at dinner that I am in awe that nobody suffers from so much as a headache the next day! It’s depressing. Not that I want to drink until I can’t see at my age, but I can barely finish a glass of wine. Then, there are times when a glass or TWO doesn’t even bother me! Go figure. I, too, have cancelled plans so many times that I can’t believe my husband doesn’t complain. This summer has been especially hard with the heat and a virus I caught back in June that gave me horrendous headaches for nearly a month! I wish they’d come out with something really great for all of us, but it just doesn’t look promising. A new patch is on the horizon, but the side effects are terrible for the heart and at my age, there is no way I’m doing that. So glad I found this forum! I know I’m not alone, but it helps to hear others’ stories and maybe we can help each other with some remedies!

  • Katyb
    3 years ago

    Interesting that you got your first migraine while in college – so did I. I, too, think it was from too much Exedrine. I also had horrendous migraines right before my period – to the minute, I could tell when it was due because of the “banger” that I endured for 2-3 days before. As soon as I got my period, I was fine. I was always told that after menopause things get so much better. Not true. I’m past menopause and so are many of my friends who still get horrible migraines. I get them whenever I’m coming down with something i.e. a cold, virus, stomach flu, etc. It just is so frustrating. My husband can be getting sick as a dog and he never gets the headache part of it!
    Also, I have to say that I was dependent on Fioricet for many years. That stuff is extremely addictive, but I wasn’t addicted to it – I just needed it to stop the migraine. Now, I find out that it’s a MAJOR cause of rebounds and looking back decades, I think 50% of my migraines were due to that drug. Now, I use it sparingly. It works, but you can’t use it alot just like Exedrine. They are both very much alike except for the butalbital in the Fioricet. Aleve works, but the stomach part is dangerous. I get horrible pains from it and bruise like crazy so have to stay away from that stuff. So, Imitrex is my saviour and now the government is squeezing the doctors to prescribe less! My doctor was “advised” to order me bloodwork to see if my liver function is ok due to Imitrex! I told him it’s my lifeline and I don’t ask for controlled drugs or anything other than a few Fioricet so please don’t start questioning Imitrex. Gosh – I swear the FDA and DEA want us all to “suck it up” and just go on. It’s so frustrating. Has anyone here experienced rebounds that lasted for days on end? I just tried to “suck it up” and do without everything except Tylenol for 2 wks. and finally caved in and took my Imitrex and a Fioricet. I was in sooooo much agony – worse than the normal migraines that I get on a weekly basis. My head was in sharp pain from one end to the other – it would move around. Even my ears and teeth hurt. I used ice, heat, rest, hydrated well, ate well, etc. I finally had “a meltdown” in my bathroom and took one Imitrex and a Fioricet and within an hour I was back to a normal human being. This just really is pathetic. Sorry, but I had to vent about that. I’ve just been reading so much about rebounds and thought I’d give it my all. Oh well……

  • tammay
    3 years ago

    Thank you for sharing your story. It really helps to know that other people have found that migraines have cost them something in their lives, careers, etc.

    I wouldn’t say I embrace being a migraineur but I don’t think about it now as a disability. I got my first migraine in college and there was a time when I used to get many migraines (though I found out these were due to rebound headaches from Excedrine Migraine that I was taking and have since quit taking them and moved to taking less medications of other things). In the last year or so, I have been working on things like diet, exercise, and attitude to try and cut down my migraines and I think it has helped. I don’t get many migraines now except for every month around my menstrual cycle. That’s been happening only in the last 6 or 7 months or so and I’m 45, so I’m guessing it’s related to hormone changes. It sucks because it’s always a 3 or 4 day migraine and nothing I take helps (I don’t take prescription medications, only OTC medications – I don’t want to start with prescription drugs).

    My family knows that I get migraines, as it runs in my family. My great-grandmother and my grandmother suffered from them and my mom began to suffer from them after menopause. I don’t live with them but when I’m visiting with them, I do get migraines (partly because of the stress of being with family). I try not to let it stop me but I have definitely had days where I could do nothing but curl up in bed with the lights out.

    Tam

  • Luveor
    3 years ago

    I am 43 years old and have suffered from migraines since I was 3 yrs old. My family used to live near the local hospital, and I was so well known there, that the ER workers used to come out to the car and give me a shot and we’d go home. I used to tell my mom I didn’t have a headache when I was little,even though she could clearly tell, because it meant yet another trip to the ER. I had many tests.. Especially ct scans of my head because back then I don’t think migraines were as common or they just didn’t know a lot about them like they do today.
    Today I’m told I have chronic migraine because I was involved in a multi car accident last year and have had daily headaches since. I have a very understanding husband and he feels horrible that I have headaches all of the time. I don’t try and hide them from him because he too can tell. We took our first cruise to the Caribbean in Jan 2015 and we almost missed seeing Cozumel, Mexico because I ended up waking up with such a bad headache.

    So thankful I found this group!

  • Katyb
    3 years ago

    I talk about my migraines with anyone. I’ve had a lot of support, but in reality, nobody really “gets it” unless they’ve had one or the many migraines that I get. I’m finding that after a medical problem this summer, and not allowed to take any triptans or my pain meds for over a week, that I’m getting less. So, that’s telling me that I’ve had a ton of rebound migraines that I think are worse than the original migraines. A vicious cycle. That being said, I still need my meds as every little thing that happens to me, whether it be a cold coming on or stress from my job, ends up as a bad headache eventually turning into a migraine. UGH! I don’t drink or smoke and really take care of myself (I’m 62) and I still get horrendous migraines – mostly that wake me up in the middle of a deep sleep!?! Had them since I’m 18. I find that I get very angry deep inside at others who party the night away, drink too much, smoke, eat terribly, etc. and never get so much as a headache! I do work part time and also volunteer at a huge cancer center so I keep myself busy. If it weren’t for Imitrex, I think I’d be 6 ft. under. It has changed my life, but now my doctor is questioning the amount I’m taking and I told him that it’s my lifeline to a productive life so PLEASE don’t limit the amount. I pay out of pocket for much more as the insurance company doesn’t agree with his prescribing me so much. I think the FDA is putting the squeeze on the prescribing methods for this drug as of this year. UGH! Every patient is different! It’s pathetic that I have to live according to how many pills I have (and we aren’t talking about narcotics or controlled substances!). I am taking a trip out of the country next month and am dreading calling the doctor for a lot more to keep me “safe” while I’m away with no worries about being laid up in a foreign country with unbearable pain. My husband will go nuts – he gets it, but sometimes in rare cases, he doesn’t. I think he’s had 10 headaches in 40 yrs. that I’ve known him!
    I’m glad I found this site so I can talk to others about the scourge of being in the Migraine Club. Everyone’s story is unique and it’s interesting to read everyone’s experiences with this curse.

  • Mardie Crucchiola
    3 years ago

    I hear you. I’m also going to be 62, and I’ve tried a lot of natural ways,but the imitrex really worked. I’ve had mine since 1990 but ever since I had bells palsey they became worse over the years. I had to finally quit work last November to go off all medications(OTC ). I too don’t drink or smoke. I followed a migraine diet elimination last December, but again couldn’t find any triggers. Yeah it’s scary when you can get addicted to imitrex,or Excederin. I’m now seeing a migraine/headache specialist. We’re trying different preventives but it’s a crap shoot too. My husband and family can’t understand all the time why I have to cancel my plans,but for the most part I try to do way too much because I feel guilty staying inside. I’m an avid golfer and I used to socialize all the time,but now my only socializing is here on this blog. It’s really helped educate me way more then any other thing. Loved your story kind of like mine.

  • deborahvan-der-harst
    3 years ago

    I talk about my migraines with only my husband, sister-in-law and doctors. One sister has a migraine every 2 months or so and doesn’t understand chronic migraines, and my other sister and my daughter don’t believe my migraines are that bad. I feel very isolated in that regard. Social media helps me connect with others who understand because they have some of the same experiences. I feel less alone, but still wish I had more support. I also stopped working when my migraines became chronic. I used to hold out hope that an effective treatment would minimize the pain enough to get my life back. Now I’ve almost resigned myself to the fact that my pre-migraine life is gone.

  • Mardie Crucchiola
    3 years ago

    Hi: I try not to be a complainer,but I thought finally quitting work would help,but again,still the same. I exercise daily,followed a very strict migraine free diet for almost 6 months. I too,have finally resigned myself too accepting these migraines,and they just may be here daily for the rest of my life.
    I don’t drink,smoke,take any OTC medicine any,ore,no caffeine. I’m not overweight,I don’t have high blood pressure,but I do have to accept that chronic headaches/migraines are part of my life. I guess ,accepting the disability is part of my battle. I used to be a big socializer and love to be around people all day long,but now I can only do things part of the day.
    My savior has been this migraine blog knowing I’m not alone in this battle.
    Always Mardie.

  • 3 years ago

    I am in a very similar place. I started getting migraines at age 13 and it was just a fact of life. I managed my illness throughout school never letting it stop me, and working through it most of the time. It was a part of my identify but not one I nurtured.

    A year ago likely due to some complications with other medical conditions I developed Meniere’s and my migraines while at times chronic, and severe became a whole new thing onto themselves. Turning into status migraine with peristent Basilar Aura and MAV. For the first time in my life I was living in a neurologist office, and constantly being sent to the ER. With the aura and vertigo alone I couldn’t work, and the pain itself was debilitating since it was causing fainting spells. I thankfully had disability coverage through work and was off for the better part of the year.

    I’ve had to go back and honor the huge role that migraine has played in the majority of my life. Name and consciously recognize all the ways I’ve constantly been addressing it for twenty years, from what I eat, to how I manage stress.

    And while I’m back to work I am accepting that things are likely never going to be the same. My migraines are still just slightly less bad than a year ago, just enough to sort of get by.

    Though through this I’ve started blogging, and have been floored by the responses I’ve been getting. When I started getting headaches the internet barely existed, the idea of this being more than a quiet thing talked about within my family (I’m third generation chronic migraine with aura), was something I had never thought about, despite being actively involved in support and advocacy groups for my other nemesis, Endometriosis.

    It is so important for us to process our experiences, allow migraine to have a healthy place in our identity, and share with others. I’ve recognized there has been a selfish aspect of keeping twenty years personal experience and 100 years of family history of managing migraine all to myself. It that knowledge is best out in the world where people new to the disorder, or simply looking for those who can relate can get some help.

  • wdjbaxter
    3 years ago

    I don’t hide them but I don’t think I embrace them either. I have just learned how to deal and function with them (well most, some you cannot function at all). For years I have been getting daily headaches and migraines at least 4-5 days a week. I actually cannot remember a time when I didn’t have a headache; it has been so long since I have been without one. I feel like I am just living migraine to migraine.
    My daughter is still struggling learning how to live and function with them. She is 15 and has been getting them since she was 6. She only gets 1-2 a month, if that. So, her daily life isn’t as affected.
    I hope for a cure or better treatments one day so that at least my daughter can live a normal life. I don’t think people realize just how badly migraines affect your life.

  • Mardie Crucchiola
    3 years ago

    I hear you loud and clear. My kids are older but my daughter started getting headaches while she was pregnant. Mine weren’t bad when they first started some 35 years ago. Drs convinced me it was all hormonsl,then when that was gone,they blamed it on menopause. Now I guess it’s old age They can blame it on. My grandmother had bad headaches when I can remember but then they called them “sick headaches” or they thought she was making it up. I’m glad we have this blog to find out we’re not alone and others are suffering also and not in silence.

  • Amy
    3 years ago

    I have had to embrace mine. Like Tammy, I’ve had migraines since I was quite young. As a matter of fact when I first complained about them my doctor told my mom I wasn’t eating enough and should have a second lunch at school. So that is what I did for recess after lunch, went back into the classroom and ate more food. Now when I get a migraine I get hungry… not that I can actually eat anything. LoL… Right now my migraines seem to be somewhat under control, but we all know that can change in a heartbeat. I actually chose my current career and field of study because of migraines. I’m a certified massage therapist and I’m working on my B.A. in Health Science in order to do research in massage to make it more effective.

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