Professional Patient: Considerations of Career Paths

Professional Patient: Considerations of Career Paths

I sometimes joke that I am good at a lot of things, but I am best at being ill. I know for a lot of those of us with disabilities and illnesses, our sick days tend to really define a lot of what we go through. While partly a joke, a real consideration I have is what I can do, besides being ill a lot of the time. I mean, what does professionalism look like for a migraine sufferer, anyway? This is a question I have pondered over again and over again over the past few years.

The challenge of navigating work and school environments

Professionalism can be so varied among people, and it looks different for each individual. For many who suffer from migraine or other illnesses, the stakes can be heightened in a society where a lot of value is attributed to individuals based on how much they can do. I don’t believe that is a good marker of value, personally. Particularly for folks with migraine, both work and school environments can be incredibly difficult to navigate and it just isn’t healthy in my opinion for any of us to be so heavily defined by our ability to fit the mold.

Not only are there challenges to working and performing under strenuous conditions for long hours, but the environments themselves can be very triggering. From bright lights and fast-paced commitments, to loud sounds and odd smells that can send a migraineur into a terrible attack, work and school can be a great source of pain. There is also the emotional stress that accompanies the expectations laid out in many of these environments that are frankly just not accommodating to those of us who experience disability or illness. With all of the barriers to access and entry, pursuing certain pathways can be disheartening, and in many ways for a lot of us impossible.

Coming to terms with dreams deferred

As a relatively recently graduated-undergraduate student, I have really struggled to figure out what professional options are available to a person like me. I thought, at first, that I really wanted to continue in academia and go to graduate school, but it had already taken me well over the traditional four years to complete my undergraduate degree, largely due to illness. I realized with honest consideration that academic environments can be really unforgiving to chronically ill folks— and I just don’t think at this point that I personally could successfully complete a graduate course of study and be attentive to my health.

That personal truth has been a huge, dry, hard pill to swallow for me. I mean, I often feel like I can barely perform the functions necessary for my day to day survival lately. I spent a great deal of time working multiple waged labor  jobs after graduation as well and neglecting my health in ways that are to me, severe. I think in a lot of ways my overcompensation and drive to work all of the time really affected my migraines negatively. During this time of constant working, I became more chronic and more fatigued. Balancing chronic pain with survival is tough, trying to develop a career seems like a mountain. I have been trying, very hard, to come to terms with the fact that a lot of what I have dreamed of in the past and the goals and aspirations I have had may not be attainable in exactly the ways I imagined before.

Alternative options + challenging myself

I believe there are multiple angles at which to see every consideration we make, so when I think about professionalism in the context of my migraine life, I tend to think overwhelmingly about the barriers, yes, but I also know that there are options outside of the traditional routes for professionalism to pursue. I am a musician, a jewelry maker, an organizer, a writer, and a coordinator with experience, and I have tried lately to really hone in on how I can develop those interests and pursuits around migraine. I am not really well suited to work a 9-5, many migraineurs aren’t, and I require a lot of flexibility when I am ill.

That means for me and for a lot of us that we have to find ways to survive, as well as ways to find fulfillment in our work, that are non-traditional. A lot of work and careers paths have a long way to go to meet basic accommodations for folks who need it, and not all of us can or should ‘power through’ those traditional environments–that leaves many of us in the alternative camp.

Possibilities

I have talked to many, many migraine patients who feel ‘boxed in’ by migraine professionally. For some chronic patients, working is not an option. For others, their industries are unforgiving and non-accommodating. This however, does not mean the possibilities are closed. Those of us who are creative may produce art to sell and showcase, others of us who might love education might opt to teach online as opposed to having to be in a traditional classroom setting. Remote positions can be really helpful for migraineurs. I try to remain hopeful about what I can do, and try not to let migraine and other illnesses dictate what I really desire to do. Sometimes, of course, that doesn’t hold through—and that’s okay too. For now, I am wracking my brain for what my next steps will be, and trying to take each moment as it comes.

What is professionalism to you? What barriers have you experienced specifically due to migraine? How do you cope? Any advice for others? Let’s discuss in the comments!

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 (6)
  • bluesguy
    3 days ago

    Hi, I am so sorry that you have had to give up on, or change your life goals and dreams. I can not imagine how hard it must have been to pursue a life in academia while suffering with migraines. I really relate to what you have communicated in this very good article. I was fortunate. I was able to complete my education to work as a Marriage Family Therapist. I also was lucky to have been an active musician. ( I played guitar in a variety of bands for around 10 years) Sadly, those experiences will probably remain in my past, due to chronic migraines that derailed my life. I too feel like a professional patient now. I am 58 now, and feel like my former life must have been a dream. Life with chronic migraines causes us to redefine ourselves, our goals, and some of our dreams as well. I hope that you will be able to realize some of those dreams some day. Thank you so much for sharing your experiences. It helps to know that we are not alone in our struggle.

  • Traceyteach
    4 days ago

    Kyky, thanks for posting this article. I can relate to many of your points. Years ago, I used to consider myself a fairly ambitious person and expected to be successful in a career both financially and otherwise. But, after battling migraines for decades and raising 5 children I have had to redefine success. Although I can still be very hard on myself for not accomplishing more. Thankfully , I was able to take some years off and/or work part time when my kids were young. That was extremely helpful in managing chronic migraines. Currently, I work as a substitute teacher most every school day. I’ve been able to tailor my jobs to convenient schools that don’t involve big commutes, minimize my working hours since I don’t have to stay for planning and meetings, and get downtime during snow days, breaks, etc. Since I mostly work in a handful of schools, I feel I can make a meaningful contribution to the students and staff and that is very rewarding to me. When I’m there I try to be the best teacher I can be. I try to stretch and challenge myself within those limits to add a little creativity or try new classroom management techniques, learn new technology, etc. I actually love my job! There is such potential to make a difference each day. If I do need to cancel due to illness (I haven’t had to very often), there are others to take my place. In the summers, I’ve been teaching Chinese students online. Of course, there is really no growth potential and there is a definite financial burden in these types of jobs. Our household income is very modest. But, I believe working set and predictable hours has helped me maintain very important routines in my days. Eating at the same times. Having a good sleep schedule. Trying to build exercise into some days. Thankfully, my spouse carries our health insurance or none of this would be possible. But, sometimes it seems that everyone else is running circles around me. You know, advancing at their careers, doing way more activities with their kids, family, and friends, keeping a better home, etc. But, I have to step back and consider myself blessed that I can enjoy a more simple lifestyle and do something I love. And I have some choices as to what my workday will look like. Some days I feel great and dream bigger. Then, there are the days or weeks I lay around with an ice pack on my head feeling overly medicated, staring into space and just wanting the day to be over. And I remind myself that it’s ok if I can’t push myself beyond what I’m doing.

  • mommathate
    4 days ago

    I…believe it or not…am a migraneur. A professional migraine specialist. I try to keep my headaches bearable (funny…maybe to us…or not), but once my eyes completely betray me. When light is out to get me. My right ear is ringing. My balance is off. And frankly when other people think I’m drunk, when I’m actually in a ton of pain, it’s time to go. In fact when I hit this point, if I bombard the migraine with a slightly higher than average amount of meds, peppermint oil on my temples, ice water, strong coffee, sunglasses and possibly cold air hitting my head. (mother natures ice pack)… I can continue to coast…with a short breather. So what do I do for a living? I sell advertising. It’s stressful. When you put your “Salesperson hat” on, people go from kind to heartless, and yet you must keep a smile on your face and keep on going. As for the heartless part, I don’t usually give them the option to NOT get past the hat to know and like ME… the human. The bonus? I get to learn about a lot of different businesses and the drama that goes with them. I need variety so as to not drool on myself (no migraine needed), and I can have great months financially without asking for a raise. I have been doing this for over 20 years, and in that time some of my clients have gotten beyond my “Hat”, and know me as a person/friend. If I have a migraine, almost all of them are great about rescheduling our appointments, because when I’m at a 2-5, I’m awesome…or sometimes only good at my job…creating new and innovative ways to make my product make them money…and they know it. If my head…body etc. starts to go whackadoodle, I can pack up my stuff and go. I have an appointment after all..with a dark room. My previous employer didn’t micromanage…but he had to go an die. I’m annoyed with him, and I miss him so very much, but now I’ve got a new guy (his son), and I’ve gotta break him in. SO
    If I absolutely have no choice cause none of the tricks are cutting it, I can go home and pull down the room darkening shades, throw on my mask, get my handy ice packs, take some magnesium and if REALLY bad, I give myself a shot of Ketrolac plus clonazapem and maybe a muscle relaxer. I DON’T do E.R’s or urgent care. The clinic I go to sent me a letter telling me not to come in unless it’s an absolute emergency, or until I get my bill paid which went up up up over a couple of months where I had more migraines than usual, ergo less business and money (that is the con of this job). So since I’ve been told to not come back (to the clinic or ER) unless I’m dying…or something… my neurogist has set me up with the cocktail you get when you go to the doc. I know if I use it to often, it will hurt my kidneys, so I will RARELY use it. It has to be a really special occasion, the “I can’t miss this or I’ll never get paid” kind of client call, or “I cannot miss taking care of my daughter and seeing her grow up”, hopefully happy and balanced. I digress. Stay with me guys. After about a 1/2 hour past giving myself the shot…if I am feeling better, I drink some coffee, eat something and touch up my hair and makeup so I can get back at it. Please know, I rarely will ever do that. I would much rather relax and let my head deflate on its own. Funny or sad? My co-workers and friends don’t know or remember my birthday, yet all my pharmacists do! Even when they see me away from the pharmacy. And they know when I have a migraine because they can see it on my face. Who would have figured that I would be such great friends with the ladies behind the counter of my pharmacy. They’re friends on my Facebook page, and know what stressors are going on in my life. They know when to apply discounts when available so I don’t have to keep coming back waiting for everything to process. They make sure I get my preventatives and they are never late. So I’m very lucky.

    I was just put on 1 of the new injections…(not supposed to mention their name) I’m on my 2nd shot. I recently just realized that I haven’t been to the neurologist in 14 weeks, and that I never scheduled a follow up…since my head hurt when I left the last time. SO, I missed my botox shots. And as I see it…if I forgot to get them, that might mean I don’t need them. So let’s see how this new path of prevention goes. In the meantime pray for less appointments with my dark room and more with my client friends, my snarky daughter and my family. Living life is a great thing. Others may not think that just going through the day, doing nothing extraordinary (to them) is extraordinary, but they haven’t been in my/our shoes. I’m just happy to feel LESS pain. The migraines aren’t ever completely gone. They’re LESS. BTW, why is my neurologist annoyed when I tell him that I’m happy that they are LESS than before even though they aren’t gone. He’s always going for the golden ticket, but they don’t do lobotomy’s (I’ve asked). He’s just going to have to buck up…nice that he cares. I hope you are all able to find the path that you love and can spend less time battling and more time living. But if you’re battling, you have all of us to come and talk to.

  • CobyMeg
    4 days ago

    I think you are on the right track thinking about online work. Perfect for migraineurs. You can totally control your environment.

    I’m retired now but I battled through professional life but it was hard when I suffered year-long migraines. I’m 80 next year and have just this week given up entirely on the medical profession (Aimovig has failed) and I am going to take up athletics again. When I was running from 1974-1986 I was migraine-free. (My spinal fusions may limit me but they won’t stop me).

  • Bobbie
    4 days ago

    I’m facing a life decision as we speak. I thought I’d retire in a few years as an elementary school teacher. However, in the last three months, my health has taken a nosedive, as if I’d never gotten Botox treatments at all. It worked for a little over 3 years, and seems to have stopped as abruptly as it helped in the beginning. They have gotten much worse, primary Dr. nor ER are of any help anymore. The last ER visit, they gave me injections of Benadryl and Ativan, and told me to take ibuprofen when my driver got me home. Oddest combo I’ve ever heard of. I think I had fewer migraines way back in the day about 5 years ago when if it reached a level 7 or above, and I absolutely could not avoid the ER, they (or my primary) knew me and would give me a shot of Nubain and Phenergan. When I woke up I don’t recall EVER having a rebound headache the next day. Anyway, I digress.
    I have missed work beyond my sick leave and am currently still out due to the stress of the migraines causing my mitral valve prolapse to act up, leaving me with heart flutters, which doesn’t make the migraines any better.
    I would love to see what suggestions or ideas people have, and will keep you in my thoughts, as I hope you find answers as well. I am going to probably have to find a new job, as my school system has all but given me an ultimatum about my “headaches, migraines, whatever you call them” “causing me to have to miss work” . I’d love a work from home option, because I could control lights and such. Surely with a BS in Education and a couple of masters courses under my belt, there’s SOMETHING lucrative I could do from home that would be good pay…maybe not to the extent I was making, which was a joke as I live in one of the lowest paid states and am making only $3000 more, annually, than I was 18 years ago! Here to support you and to see what kinds of ideas anyone has for a way to make a living (not tutoring) from home via computer. Best wishes and hang in there~

  • Sarah10
    4 days ago

    Yes to all of this! I’m a part-time classroom teacher (art for K-8) and have to struggle to get through too many days with ringing ears, dizziness, pain, etc. I work in a room with no windows, full of florescent lighting, and kids can be rather loud. My migraines started as I finished grad school, which I thought meant a possible new job at a higher wage. Once my issues started, I became terrified of having to report for full days, knowing that I’d have much less time for self-care and recovery. I’ve also had cognitive issues with my migraines, which make me feel like a total idiot at times.

    I’m at the point of re-assessing my options. Like you wrote, I have to figure out what it healthy for me and how I will measure my success. It can be sad, having to abandon hopes and plans, but staying as healthy as possible seems to be my current measure.

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