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When the Truth Smacks You in the Face

In recent weeks, I’ve been considering applying for disability due to my migraines. Around the middle of February, I had to leave a new job that I’d only been at for roughly a month because of the migraines. That makes four jobs, in total, that I’ve lost or had to give up due to this disease. When I started the job, I was extremely hopeful. A couple of weeks before Thanksgiving, I had gotten the daith piercings and I was showing drastic improvement. I thought that I had FINALLY found the solution for me and I could regain some of my life, starting with a new job. Unfortunately, for me the daith piercings turned out to be a rather temporary measure. In the middle of February, the weather and temperatures in my area began to fluctuate drastically and my migraines were back in full force.

After missing much too much time at work, especially at such a new job, I reluctantly informed my boss that I would not be returning because it was clear that my disease had once again shattered any ability I had to be the reliable, hard working individual that I had been in my youth. In the month and a half since making that decision I have been wringing my hands in frustration and doing quite a bit of soul searching. I’m having to once again face the reality of my situation. I’m not the same person I used to be. The sad thing is, I use the phrase “in my youth” when I’m actually supposed to be in the prime of my life at 31 years old.

I had very specific goals and dreams for myself when I went from episodic to chronic migraines. I had grand plans of going back to school while working hard so that I could achieve my goals. But, unless a cure is found for this disease or I’m fortunate enough to find a treatment that will work long term, I’m not going to be able to do that.

I used to be able to power through and function through all except for the most severe of migraines. As time and this disease have worn on, I find that I have lost the ability to do that. I physically don’t have the strength or ability to. Even when the headache itself isn’t too painful, all of the other symptoms have gotten to the point that I just CAN’T. As I’ve come to this realization and find myself battling with the decision of whether I should apply for disability, I can feel the depression setting in. My usual, sunny, stubbornly optimistic outlook has fallen to the wayside as I now have to re-evaluate my life and where this road I’m on can take me.

When the truth of your existence smacks you in the face, it’s not an easy obstacle to overcome.

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

  • tlocker
    1 year ago

    Not to dissuade you from pursing SSDI, but if you can find an employment opportunity in the proper size of company, you may be able to utilize FMLA as an option. It is unfortunately unpaid leave, and you have to use up all medical and vacation leave first, but can protect your job.
    After ten years fighting to work in three different positions with chronic migraine, I was ready to apply to SSDI (averaging 14 days/month of migraine, missing average of 4 days of work each month. I finally landed in a work environment that values my skills enough to work with me, and the HR administrator who suggested applying for FMLA. Plus my immediate supervisor’s mother had migraines, so she is understanding.
    I have had to do some education with co-workers, and still struggle with my own self-esteem in not being the ‘star’ employee as I used to be, but would encourage you to not give up hope. As others have noted, even if you are receiving SSDI, you can still work, just have to be very aware of the amount you can work and not lose benefits. Best of luck to you, and may there be new treatment that works for us all soon!

  • SilverPhoenix13 author
    1 year ago

    I used to work for Walgreens and I had intermittent FMLA. The problem is, if you use the FMLA too much, then you will not have enough physically worked hours to qualify for FMLA for the following year, which is what happened to me, and then led to me losing the job. FMLA hours used do not count towards the hours that qualify you for FMLA. You have to have physically worked 1250 hours in the previous 12 month period.

  • bluesjr
    1 year ago

    I don’t read too many posts on migraine.com because I don’t want to have migraines constantly dominate my life, but yours really struck me because I’m having to make a decision.

    I’ve had migraines for 5+ years now and they have profoundly affected my health and life. Like so many others, they got worse and became chronic. The combination of botox, amitriptyline and amlodipine keeps me functioning, if somewhat drowsy all the time.

    So, my current decision dilemma is to volunteer in the community. I’ve already interviewed at the local food bank, and I’ve contacted a local school for a tutoring/mentoring situation. I thought I could do this or I wouldn’t have started. Well, after a few minutes in the lobby of the food bank with overhead fluorescents, I stood up to meet the volunteer coordinator and was already dizzy from the lights. At the barber yesterday, and the dentist today, same experience. So many things can trigger a migraine for me (like today’s cloudy weather), and right away, here was something inescapable about both work environments (school and food bank).

    It’s hard to admit I am not capable of making even a small contribution to society, and that all my energy revolves around maintaining my health (eg. proper nutrition, sleep, exercise, stress management, etc, etc, etc). That’s my reality. Just very hard to accept. I’m going to withdrawal my availability for the food bank. Still on the fence about the school.

    Anyway, I want to second Lee614’s advice about disability. That was the path I went down. Apply, get rejected, get a damned good disability lawyer and go at them again. I believe I was denied again, appealed, then finally won after a court appearance. One tip my lawyer gave me was “describe your symptoms on your worst days”. The lawyer was expensive, but worth it. And btw, I got disability for CFIDS, which happened to me in my prime, 15 years before the migraines. I think the migraines have been worse/harder than the CFIDS (aka chronic fatigue).

  • SilverPhoenix13 author
    1 year ago

    I definitely understand your feelings. Right now, school just doesn’t seem to be in the cards for me. I’ve tried to go back twice, and both times I had to withdraw because I was missing too many classes with my migraines. I’ve been trying to become a Sign Language interpreter. I am extremely passionate about Sign Language and Deaf culture. It’s a HUGE bonus that being an interpreter has a lot of flexibility, as well as being a rewarding career in all other aspects. Unfortunately, it’s not a degree I can earn online.

  • Lee614
    1 year ago

    I hope that you will go ahead and apply for disability. You can fill out the form on line. It is important to stress “when I have a migraine” in describing your disability. And, make sure that the person who will be questioned about your disability does the same. It is important to describe your functioning ability at it’s worst. You should go to your doctor now and have your depression and any other health issues documented and include them in your application. You might be denied at first, but after receiving the denial letter, be sure to contact a large law office that specializes in disability cases. They should get you approved. Now, after you are approved, don’t give up hope. First of all, take some time to hopefully get your symptoms under control without the added stress of going to work. After you start feeling better, you can work some while maintaining your disability income. There are programs to help you. This doesn’t have to be the end of your working life. Best wishes to you!

  • debbieleq
    1 year ago

    Thanks for sharing. I too have had to leave two excellent jobs due to migraines, I was so disappointed but in both cases it was like a mutual decision because I just couldn’t meet the attendance the employers needed. It is so hard to accept that you can’t power through like before. My neurologist actually yelled at me when i stopped working. He said he had many patients with migraines that work full time with no problem and I should be able to as well. I asked him would you hire someone who has untimed migraines and cannot do the basic functions of the job due to dizziness? He said no of course not. I told him well why would he expect someone else to. I think this is a good example of how people view people in our cases. My migraine is continuous. I have had a migraine with absolutely no relief from any treatment or preventatives now for going on three years. I wake up with it, and what little sleep I have is accompanied by it. I have yet to find a person who can really understand how I feel. I have a high pain tolerance so I have become able to deal, but about 4-5 days a week I am unable to function. I can’t think straight, my vision goes out completely and sounds become like sonic booms. It sucks because I don;t wake up with these symptoms every time. I could be in the middle of the day and be struck by the trifecta. I am always anxious because I am always waiting for the pain to go from bad to worse. So how can I commit to a stable job when I don’t know if I will lose my vision half way through my shift? People are so quick to judge you about how you could possibly be so lazy to give up, or you must not be that bad because of the way you have conditioned yourself to deal. It makes our already difficult decision harder.

  • Lee614
    1 year ago

    I feel for you! Last year, a neurologist gave me a hard time when I told her I was not able to work. Fortunately, I am already on disability. I had a great PA who advised me to stop working or I would end up hospitalized or worse. I would love to be able to function normally at home let alone at a job. A different doctor had told me that it was impossible to get on disability and that the paperwork was enormous. I did not have a problem filling them out on line. It’s set up so that you can start and stop as needed. Unfortunately, the popular notion that migraine is simply a bad headache that is treatable by popping a pill makes it extremely difficult for those of us who have to deal with the debilitating symptoms.

  • SilverPhoenix13 author
    1 year ago

    I understand your feelings. I don’t have a migraine 24/7, but I do have upwards of 20 to 25 migraine/headache days a month. I’m fortunate that, for now, at least I do get a reprieve in the summer. Usually from some time in June to about the first couple of weeks in September, I only average a handful of migraines. I’ve had treatments that have helped, but my body always adapts to where they stop working. I didn’t get the chance for that to happen with Botox because I only had one round of treatment before I lost my job and my insurance. This last job I had to leave counts as the fourth that I lost/had to give up due to my migraines.

    I broached the subject of disability with my doctor and my neurologist. My doctor not convinced that it’s the right option, mainly because I’m relatively young, but he says he will support my decision and help me with my application if I choose to apply. My neurologist says that she will do what’s needed to help me apply, but she is almost certain that it’s not possible to get approved based on migraine alone. She says that any of her patients that have been approved also had other health conditions such as deep seated depression and that is why they were approved.

    I’ve developed anxiety because of this disease. 1) Because I’m always waiting/expecting a migraine to hit. 2)Because of all the ways my life has suffered because of this disease. Before I lost my long term job, I actually had a nervous breakdown one night when I had to call out of work using FMLA, yet again. I was just so DONE with it all – not being in a stable financial position because of lost work hours and money spent on doctors/ treatments, not being able to finish schooling and pursue the rewarding career that I wanted, having to miss family gatherings or cancel dates with my husband when a migraine hits, and just not being able to be the person I used to be before I became chronic. It was all just TOO MUCH.

    These very same issues have led to an underlying depression. I feel helpless, hopeless, and useless because of how this disease has wrecked my life. I’m by no means suicidal, but I also get days when it all just feels pointless. I find myself wondering why I even exist if this is all there is to my life.

  • SilverPhoenix13 author
    1 year ago

    That’s exactly how I feel, twobassets. I come from a very stubborn family that doesn’t like to give up. I’m having to convince myself that it’s not giving up to take care of yourself.

  • Nancy Harris Bonk moderator
    1 year ago

    Hi SilverPhoenix13,

    Thank you for sharing your journey with us. You’re right – when life doesn’t turn out as we hoped, it’s not an easy obstacle to deal with. I can tell you you not alone and are in good company.

    It took me years to apply for SSDI. I didn’t think I was “disabled” enough, but soon learned I am. I was denied the first time, then used a lawyer as was deemed disabled.

    Before applying for SSDI, I needed to convince myself that I was unable to work, so I was a receptionist in a veterinary office three days a week. In six weeks time, I had three infusions and realized I couldn’t do it.

    Accepting that I am disabled has not been easy, something I continually deal with. On one hand it’s a relief, on the other hand, I’m disabled! It’s not the life I thought I would be living, that’s for sure.

    We’re here for you!
    Nancy

  • Lee614
    1 year ago

    It is hard to finally admit it to ourselves! I stuck it out teaching until it got so bad that I either had to quit or be prepared to call an ambulance at work. Thank you for sharing!

  • SilverPhoenix13 author
    1 year ago

    Thank you, Nancy! I don’t really post much on the site. I’m more active in the comments of Facebook entries that Migraine.com shares, but finding this community two years ago has been a huge comfort. To be able to interact with other people who TRULY get it has been amazingly helpful for my sanity. My mother understands somewhat because she also used to get migraines, but even she says that she never got them as frequently or as bad as I have. Other people with invisible illnesses, such as my sister in law, are able to empathize because they go through similar experiences. But again, they don’t fully KNOW what it’s like the way other’s I’ve met in this community have.

    I’m still working on convincing myself that I’m truly disabled enough. This most recent job I had showed me that I definitely can’t do conventional work, anymore. In recent weeks, I’ve been looking into work at home positions. I’m still stubbornly hopeful that I can find a gainful means of employment so that I don’t feel quite so useless and so that I can carry my weight when it comes to supporting me and my husband. He has a full time job, but I hate the idea that he has to be the sole provider.

    My biggest obstacle is that lack of health insurance. What’s available through my husband’s job isn’t worth the paper it’s printed on and I’ve been unable to keep a job long enough to qualify since I lost my last long term job. If I had proper insurance, I could begin Botox treatments again. I had one before I lost the long term job that I had insurance with and it helped amazingly well. Though, I can’t say whether it would be a long term solution as many treatments have worked for me in the past, but they were only temporary as my body tends to adapt to those treatments so that they are no longer effective. It’s an endless, frustrating, depressing cycle.

  • twobassets
    1 year ago

    This is tough to take. You can often feel like you are giving up too soon or not trying hard enough. Nothing can be further from the truth. I am still kicking and screaming against the concept of leaving the workforce. I have a few years on you but I know what it’s like to be 30 and feel so much older and slower. Sometimes I feel like I spend days swimming through molasses. I can tell you that sometimes not fighting so hard can help. Give yourself a break. It isn’t something you are or aren’t doing it’s a difficult medical condition that often changes over time. Hope you find some relief. My last defense is a dark, cool room and quiet. I don’t like it but it helps.

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