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Not a Human Doing – A Human Being

Not a Human Doing – A Human Being

Ever heard the phrase “Elevator Speech”? In my past life as a fundraiser it was a well-known term that referred to the important ability to quickly and compellingly summarize a mission statement or need for funding. In the world of dinner parties, it can be similarly helpful to be able to quickly describe our personal lives.  People we meet generally want a simple, straightforward story that pleasantly describes who we are and what we do in the time it would take to take an elevator to get from the lobby to the fourth floor.

In a world where everyone is interested in what people are “doing” with their time and how they are spending their days, there is no clean or quick answer where chronic migraines are concerned. The condition makes life messy and difficult, and sidelines many of us from work. Indeed, migraine is now the sixth leading cause of disability worldwide. We are all so career-driven that it can sound weak if we say we are taking care of ourselves.

It’s been five years since I was disabled due to chronic migraine. In that time, I’ve fielded the dreaded “What do you do?” question more times than I care to count. And my responses have evolved dramatically as my comfort level with the situation has increased and a sense of peace and acceptance has settled in.

When I first stopped working it was a very sore topic. I felt as if I had lost my compass. I struggled to describe myself. My career was the primary way I had defined and introduced myself to others for years. I was driven, focused and successful in my field. Did I launch into an overview of my prior career in an effort to prove my worth? I was only 40, so I was too young to say I had retired. My grandmother instilled in me that when people ask “How are you?” – they actually have no interest in hearing any answer beyond a cheerful “I’m fine.” So I was far too uncomfortable to introduce myself as disabled to anyone.

I began to call myself a “stay-at-home mom” to those who asked. In essence, that’s what I had become. But, it felt false to say because it was not something I had chosen. It had been forced upon me. It felt as if my career wings had been clipped. But after just a few months I began to claim that title with more comfort and even pride. I realized that an odd upside of chronic migraine is that it had actually gifted me more time with my children than I would otherwise have had.

I quickly came to learn that the term “stay-at-home mom” can sometimes come with negative connotations when people wondered about my productivity. All of these titles and related discomforts made me ask myself a lot of questions about who I was trying to please ultimately. Why did I care so much about what others thought of what I was doing in the first place?  After much reflection and meditation, I came to see that the awkward encounters I was having in trying to answer the “what do you do” question was a reflection of my own internal wrestling match. It was primarily coming from me.

In recent years, I have come to see my professional years with gratitude rather than longing. I still possess and can use those professional skills. I know I had a positive impact on the people I served and I will carry that with me always. I have found meaningful volunteer opportunities that fit within the confines of my migraines and also provide me with a sense of accomplishment. Moreover, I now see the importance of being defined by who I am rather than what I do.  I don’t want to be defined by my migraines in the same way that I no longer want to be seen only through the lens of a profession or lack thereof. I see the greater value lies in the way I carry myself in this world – the way I treat others, doing my best to be kind and respectful. Those are ways I will have the most lasting impact.

While my elevator speech might be less traditional than others, I am finally at peace with the fact that I had to lay my career down and am going forward in a way that involves self-care and a new definition of productivity and value.

 

 

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

  • BethBlue
    2 years ago

    This reply requires a certain sense of humor, but for me, “Whatever it takes” really works. In this day and age, asking someone “what they do” should be regarded as rude because there are so many nontraditional occupations and ways of earning a living for both genders. For instance, how does a man feel when he’s the stay-at-home dad and he is asked that question? Does he answer truthfully, or does he find a way to finesse his answer? I’m curious to find out how male migraineurs deal with this question. Nevertheless, the bottom line is this: If you’re rude enough to ask, you don’t deserve an answer.

  • Holly Baddour moderator author
    2 years ago

    @bethblue – what a refreshing idea for a response. And I’m with you on being curious about how the male migraineur navigates this question. Thank you for sharing! Warmly, Holly B. (migraine.com team).

  • Deb
    2 years ago

    Great article. I relate to it and so many of the comments of other mrigraineurs here. Although my migraines started when I was 21, they were rare enoigh to be managed sučh that I was able to have a career, finish college and seminary and begin fulfilling a calling of pastoral ministry. Something happened, though, neurologically. The migraines became Chronic Migraine, Menieres Disease literally took me down, and I had two cerebellum strokes and at least one TIA. At 59 my doctor told me I needed to completely change my life. Of course. I already knew that. I could no longer function as a pastor or in any type of employment. Migraine 24/7, inability to think and communicate clearly, walking like a drunk or not at all. I moved to lower altitude as recommended, went on long term disability, and found specialists to help treat my “conditions.”

    Having moved to a retirement community, it is easy to say “I’m retired.” But that does not explain why I am rarely seen outside the house. The perception by others is that I am either “very private,” “unsociable,” “antisocial,” etc. Even family members don’t get it. How could they? Until we walk in another’s proverbial shoes, we cannot relate. That is why this forum is so helpful. You all “get it.”

    Going from being at the top of my game in a corporate career and then fulfilling a calling I loved, from being very high functioning to rarely barely functioning has been extremely difficult to cope with, and being totally misunderstood by others certainly adds to the stress. The worst part for me, though, is a broken heart that grieves the loss, through no choice of my own, of so much I loved of the life I was blessed to live. I have accepted the reality of the daily struggles, but my heart still aches and my eyes still leak … and that’s ok. “Precious memories, how they linger.” What hasn’t changed is the love I hold within, the thankfulness that fills my soul for the opportunities I have been given, and a grateful heart for every moment I’m granted going forward to do the best I can, how little or how much that may be.

    I’ve learned to not worry about the judgment of others, to allow myself to grieve, to give myself permission to take care of myself without guilt, to “pray without ceasing,” to trust God no matter what, and to learn and grow through this present suffering that I may be able to empathize with others who suffer disabling conditions. As limited and few my “clear” moments or days, I live as fully as I can in every one and treasure them. Meanwhile, I do my best, and whatever that is, it’s enough.

    For those applying for or considering applying for disability benefits, it is extremely difficult and stressful, which exacerbates our disabilities. I encourage you to not give up and to make sure you are represented by a disability lawyer or specialist. I was referred by a family member to Allsup after the first denial. It took four years, several appeals, and a hearing before a judge, but the judge ultimately ruled fully in my favor. Without the help of professional disability advocates, I would have been unable to persevere. So please, comrades, get professional help as early as you can in the process, even before you apply if possible.. Chronic Migraine is becoming increasingly recognized for the neurological, disabling disease it is. But do not try to maneuver through that process on your own. You need all the help you can get. Hang in there. Persevere. Get treatment. Keep a log as best you can.Do everything your disability specialist advises to the best of your ability and don’t give up hope.

    In closing this unintended lengthy diatribe, I thank you for this forum and wish all my mrigraineur sisters and brothers all the best.

    Deepest regards,
    Deb

  • Holly Baddour moderator author
    2 years ago

    @gubs – Dear Deb- generally I try to respond to comments with some bit of wisdom I have gleaned from navigating Migraine for over 40 years. But for you, I don’t have much to add. What you shared is beautiful and I relate to your outlook on so many levels. I have worked hard on acceptance so that I do not live with regret or spend time feasting on memories. My goal is to live in the present and seek as much gratitude as I can in what today has to offer. My life has landed me in a very different place than I had initially pictured, but there is much to fill my heart. We have a number of articles on the topic of acceptance in case you’re interested: https://migraine.com/?s=acceptance&submit=Go . Your level of reflection is astounding and I’m grateful you were willing to take the time to share it with the rest of us so we can learn from you. I hope many will read what you wrote – feel your support and soak in the guidance you provided. So glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  • mammapeaches (Susan McManus)
    2 years ago

    Glad you are getting more comfortable in your “skin”. I actually was a stay-at-home mom, by choice, for 17 years. I always thought I would go back to work when my girls went to college. I got the opportunity to work part time from home for my brother. It was great to be back in the adult world! Then, chronic migraine hit! If I’d had a “real” job, I would be on disability. So, now, I don’t know how to answer that question! I guess I’m just plain old retired at 56! I too have found some volunteer opportunities that I can bow out of if I’m having a bad day.
    We are certainly our own special fraternity for sure!

    Great article!

  • Holly Baddour moderator author
    2 years ago

    hi @susanmcmanus– Thank you for your comment. I’m at the same juncture you described as my kids being on the verge of being college-bound. However, as I outline in the above article, I realized after I stopped working that it didn’t matter where or how I spent my day, chronic migraine follows me. You mentioned that you consider that you may just be retired at 56- and I wanted to mention that I know many people in the migraine community that answer the dreaded, “what do you do?” question by simply saying “I’m medically retired, ” or “I retired early due to health issues/migraine.” Like you, I have sought out some very flexible volunteer opportunities that help me feel useful but are easy to cancel if I’m incapable on a given day. We really are a unique community. Glad you’re here! Warmly, Holly B. (migraine.com team).

  • brenda de jesus
    2 years ago

    I also had to stop working at age 44. I am fighting for disability with no luck. My neurologist told me that I would never get disability for migraines alone Although I am chronic. Even though thats her opinion I am still fighting for my disability. But I struggle with letting people know I don’t work do to my disability. I feel like they will look at me as being lazy. I have my 30th high school reunion and I will not be attending because I don’t want to answer the number one question, “what do you do”. I pray not to run into friends and I don’t go to any social events.

  • litoria76
    2 years ago

    I understand what you are going through. I’ve been denied disability twice and my appeal was denied. Now I’m waiting the 18-22 months for a hearing and then it’ll be 6-7 months for the judge to decide. Since I became chronic 4 years ago I’ve lost most of my friends because I either have had to cancel plans too many times or being around me brings them down. I’m 41, single, and completely dependent on my 75 year old mother for support. I lost my job 3 years ago when I was denied long term disability and unable to return to work. (Staring at a computer screen for 8-10 hours a day was triggering my migraine.) I’ve gotten to the point where I rarely leave the house due to migraine attacks and social phobia.

  • Holly Baddour moderator author
    2 years ago

    @danadibs1979 – I’m so grateful you took the time to reply here and connect with others to share your story in a kind effort to provide support. Your story, though illustrative of an epic struggle to secure disability, is not completely unique. I’m grateful that you detailed the challenges you have faced because it shows the amount of drive and focus it takes for so many to be successful in this process. How ironic that we, who experience severe pain and other significant and complex neurological symptoms (including difficulty thinking straight!) are expected to organize and lead a sometimes multi-year legal process to gain disability (when migraine has already been proven to be the seventh leading cause of disability). When our lawyers are not experts in attaining coverage for migraine, the onus can fall to us to connect dots or pick up pieces that might have fallen through cracks. Meanwhile, as you so aptly described, we have mini (and very normal) windows of wellness (as migraine is rarely a constant state or pain/symptoms). This reality, in the face of the steep uphill climb to achieve benefits causes us to question if it’s all worth it. Then, we experience a severe hit of pain again we are reminded that of course it is worth it, but then we are completely down for the count and incapable of moving the process forward. It takes enormous patience and a lot of work while juggling tremendous sometimes blinding pain. Somewhat like you, I have begged my husband to chop my head off. I guess I just wanted to say, I’m so glad you’re here, @danadibs1979 – you are a wonderful asset to our community- and we are a great stand-in for facebook! Stay in touch. Warmly, Holly B. (migraine.com team).

  • Holly Baddour moderator author
    2 years ago

    @litoria76 – What you describe is a reality that is unfortunately quite common for us in the Migraine community. Being sidelined from our careers just to face an incredibly hard uphill battle with disability (even though it’s the 7th leading cause of disability in the world!); struggling with finances, friendships, and being dependent on family in a way we never imagined. The condition can be so very isolating in its nature. I’m glad you are a part of our community because it’s important to remember you are not alone in this and I appreciate that you are connecting with others to help remind them that they are not alone. Grateful that you are here- Holly B. (migraine.com team).

  • Dana
    2 years ago

    litoria76
    I also understand the battle’s you are experiencing. I stopped working 4 years ago. My disability has been denied by a judge, then challenged to an appeals council and denied by them. I can now go to federal court or reapply. My attorney can not represent my in federal court. Part of me feels like, “well, am I really disabled”? But, when I am begging my ex husband (yes, who moved back in with us and is my rock) to put a bullet in my head through sobs and the small breaks I get between vomiting…..I know I am. I punch myself in the face, or bang my head against a wall to get a different pain as a distraction from the migraine. Back to the disability case…I have no idea what federal court would entail, so I am reapplying. My lawyer made some mistakes (like not submitting all pieces of evidence on time, so some very important records were omitted by the judge. I do not think she represented me to the best of her ability. I have a consultation with another attorney, but his receptionist warned me given how far my case went and was still denied he may very well decline to take my case. Initial application was Sept. 2014 last ditch denial was Jan. 4 2018. It’s been a long road. But I will press on because I have no other choice. As far as the social aspect I get that too. I’m 38…..actually one of the reasons I was denied. I’m embarrassed, I’m young ish, I hate running into people I know on the RARE occasion I’m out. And the friends I did have have basically vanished. I can’t blame them, you can only be told no so many times before you just stop asking. I’ve deleted all my social media, well Facebook was all I had because as far as social media goes I’m old!! I don’t want to see what I’m missing. This is my Facebook. We’re all in the same boat, no one is posting pics from their girls trip to Vegas or whatever people without migraines get to do. Wow, I did not intend for that to be a small book, but I just got on a roll. Sorry!

  • Holly Baddour moderator author
    2 years ago

    Hi brenda de jesus- I’m so glad you shared some of your story. What you are struggling with is so normal. First, with the disability application process- it very frequently goes to the appeal process before it is approved. We have a number of resourceful articles on this topic, in case you haven’t seen them yet, here’s a link: https://migraine.com/?s=disability&submit=Go . Second, the challenge of acceptance. Learning to accept and turn empathy inward is a long and winding road. It can take years to find an answer with which you are comfortable to that often asked “What do you do” question. The first two articles to the link I provided above to speak to the question of accepting that you are on disability. I hope those might prove helpful.

    I personally find that if we can work on being more empathetic toward ourselves, a first step being to treat ourselves as we would treat others (I know it’s a reverse statement to the one we are accustomed to hearing), we begin to build our own sense of confidence that we are on the right path for us. We begin to believe and know deep down that we are taking care of ourselves; that we are doing all we can with what we’re up against; eventually, our confidence grows such that when we are asked what we are doing, the answer flows naturally as we feel sure-footed in the belief that we are absolutely doing something. We are not being lazy, we are doing immense work every day to fight off severe pain. Our journey is no less important than anyone else’s. It is simply different than that of others and therefore our life lessons will be different as well.

    Another way to decrease the likelihood of encountering judgment is to kill them with facts. Some of us don’t love the idea of having to be an educator on the topic of Migraine, and there are ways around doing so. However, there is so much misinformation and ignorance out there that if you are comfortable in doing so, it can do wonders in changing and improving the conversation. The majority of the judgment we encounter is simply born out of ignorance. To counter that ignorance, it can be helpful to memorize some simple stats related to the prevalence of Migraine so that others see this is not “all in your head” but rather that you are part of a complex neurological disease and one of over 36 million who’ve been diagnosed. If you aren’t comfortable delivering these stats, you might think of forwarding some articles on the topic that have resonated with you to others in your life to help them understand what you’re up against, and again, that you are not alone. This last approach may not help with a 30th reunion type of event but it can serve a purpose.

    I hope this helps and definitely want to remind you again, that you are not alone! Please stay in touch. Warmly, Holly B. (migraine.com team).

  • Cutmyhead
    2 years ago

    Thank you for your answer, Holly B. I’m going to print and tape it to my wall to re-read it often. I would never judge anyone else this harshly!

  • Holly Baddour moderator author
    2 years ago

    Glad those words could provide some solace. There’s that old saying “treat others how you would like to be treated” – but in this case, we have to remember to treat ourselves how we would treat others! Warmly, Holly B. (migraine.com team).

  • Cutmyhead
    2 years ago

    Dear Holly, you’re a lucky person for reaching the point where you really feel content and proud of your life and not like a loser.
    It’s taking me very long to realise that this is not a temporary situation and that I don’t have chronic migraines but, I am a chronic migraineur.
    Soon after reaching my hardly sought professional goal, the effects of the chronic migraines became so severe that I had to stop working.
    But, in the way to disability, I ruined every lbit of pride that I had by having to frequently cancel or change schedule, and work slowly. If not enough, the pain took away my charisma and dealing with people at work became difficult.
    Nowadays, i have more migraines than ever,. After 2 years off work, I feel every day more embarrassed for having allowed the migraines to win over my will power.

  • Holly Baddour moderator author
    2 years ago

    Cutmyhead- I really appreciate your honesty and believe you speak for many who are in the process of trying to come to terms with having Chronic Migraine. It is not dissimilar to a grieving process. There is anger, denial, bargaining, acceptance, and more. And the process is not linear. I stopped working nearly 7 years ago now and it has taken many of those years to find my footing emotionally and to stop feeling that migraines are my fault. I might encourage you to remember how powerful our words are. When you tell yourself that you have allowed migraines to win over your willpower, you are implying that you have had a choice in the matter. Coming to accept that you truly had no choice in having migraines- but instead your choice came when you faced up to the fact that the condition was not allowing you to continue working. That takes enormous courage. I’m trying to remember that while I never would’ve chosen migraines, they have forced me to dig so deeply and find strength I never knew I had- and that all of us with chronic migraines are extraordinarily resilient – with such grit and my goodness, WILL POWER! Talk about will power! The will power it takes to navigate and muscle through every day with the severe pain that comes with migraine! You have will power in spades as far as I’m concerned. I’m so glad you are a part of our community. Keep in touch! Warmly, Holly B. (migraine.com team).

  • Casper6
    3 years ago

    I struggled with the occupation status for years. When I would get a good job going, my migraines would always throw my off track. Then when I had babies I did stay at home. I did try to fill in with jobs I could do at home, like a church secretary. When I had all my children in school, a position that was perfect was introduced to me. I became a substitute teacher. I was able to pick the days I wanted to work. And if I got up with a migraine, I just canceled the job (I had a number I could call really early in morning) and didn’t get any grief from the school. This could be a suggestion to others. I love it.

  • terahkuy
    3 years ago

    Funny – I heard this phrase for the first time today from my therapist. It’s definitely been and will continue to be a struggle – I can understand it cognitively, but my emotions don’t follow suit. When your entire life has been about “becoming” and that suddenly screeches to a halt it is identity stealing.

  • DonnaFA moderator
    3 years ago

    Hi terahkuy. Please know that you’re not alone in this struggle. I feel that disconnect between my intelligent and emotional selves, too.

    Maybe we don’t stop becoming in these moments, maybe the becoming just shifts and it becomes about being more gentle with ourselves (I know, harder than anything I ever try, as well!). I’m sending you good wishes. We’re always here when you need an ear, and to share support. -Warmly, Donna (Migraine.com team)

  • mrst53
    3 years ago

    I was lucky that I was able to stay home from the time my son was born, so that when migraines kept me home, after working for awhile, I just continued saying, I was a mother and a wife and those were the best jobs I could ever have and the only jobs I ever really wanted. 🙂

  • DonnaFA moderator
    3 years ago

    Hi mrst53! I absolutely agree with you, it is the most demanding, most rewarding job I personally have ever had as well.

    Thanks for being here and for sharing your thoughts. -All Best, Donna (Migraine.com team)

  • Luna
    3 years ago

    We do live in a world that seems to define us by what we do not who we are.
    “I see the greater value lies in the way I carry myself in this world – the way I treat others, ” Fully agree.

  • Nancy Harris Bonk moderator
    3 years ago

    Thank you Holly, this is a great article.

  • RenWhite
    3 years ago

    Such a good reminder for all of us! Love this!

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