Last week, I learned why some of my doctors won’t fill out my disability paperwork and I was surprised. It wasn’t the time it took. Their decisions seemed to be based on principle. The nurse practitioner at my headache clinic said, “Patients who work do better with treatment, so we encourage our patients to work and therefore don’t fill out disability paperwork.” Later that day, I watched the Migraine World Summit 2016 where a doctor said something close to, “You can be in pain anywhere so you should be at work — which will make you more happy and successful.”
I feel I must challenge these notions. I agree that patients should work for as long as they can, but there are people who need to miss work during pain or illness flare-ups, switch to part-time jobs, change careers, and even stop working altogether because of their health issues. These changes are simplified when doctors complete paperwork.
Contrary to what many people believe, the Family Medical Leave Act (FMLA) and Disability Insurance don’t require patients to completely stop working. FMLA allows patients to miss 12 weeks of work without repercussions from their employer. Many people have jobs with strict attendance policies. If they miss more than their quota of “sick days” due to illness without having a doctor complete FMLA paperwork, they will lose their job. In these instances, even when they are well enough to work, they will no longer have a job. If doctors want struggling patients to continue to work, they should fill out their FMLA paperwork.
Disability paperwork is also misleading. Here is my experience with it. I worked full-time for 10 years as an educator while having a constant migraine. Though my pain worsened, I resisted leaving work because I wanted to “do my part” and contribute. But there came a point when I could not continue. I was an ineffective teacher and I was unable to meet my basic needs, let alone those of my students. I had private disability insurance which defined the first 24 months of “total disability” as “unable to perform each of the material and substantial duties of your employment.” Because I had a doctor willing to fill out FMLA and private disability paperwork, I was able to take a leave of absence from my teaching position.
I took several months to regroup, try some new migraine preventative medications, recover from bad side effects, and switch to other medications before I was able to return to a part-time, non-teaching job. Though I was working, the pay from my new position did not cover basic expenses. At this point, I applied for Social Security Disability Insurance (which did not require my doctors to fill out paperwork, though my medical records were reviewed). I received it and continued to receive a portion of the private disability benefit, even beyond 24 months, because “Disability means you are unable to perform the material and substantial duties of any gainful occupation …” Social Security has similar guidelines and basically defines this as earning less than $1170 a month. My doctors were willing to complete Continuing Disability Benefit forms and I was able to work for five years while receiving disability payments. Even though my doctors filled out several forms, I was still working.
Then there are patients who really can’t work at all. Unfortunately, for the last two years, I have been one of them. I have a constant migraine that spends most of the time on the pain scale between 6-8. You may be able to be in pain anywhere, but I was in greater pain at work; where I was unable to avoid my triggers or rest between activities. Contrary to what the earlier mentioned doctor said, in the weeks before I left my job, I was unhappy working in my condition and I was unsuccessful. I was failing at my tasks because of cognitive and physical impairments and I was exhausted, not to mention being unable to keep up with basic chores at home.
My pain is better when I exercise; participate in very limited social activities; and do self-care activities like cooking, food shopping, cleaning, laundry, paying bills, and visiting doctors when I am at a level 6 or lower and with rest breaks in between. My migraine symptoms cause me to do these “regular activities” at a slow pace and they take up all of my energy, leaving nothing for a job.
My career now is to be a great patient — I concentrate on trying new treatments and maintaining a healthy migraine lifestyle. Writing this article has been a luxury for me and has taken me over a year to complete. I hope the preventative medication I began three weeks ago starts to work and that I find myself able to return to employment, but today I am not able. Today, I have bills to pay. Living costs money and living a healthy lifestyle with quality healthcare costs even more money.
My disability benefits help me to survive. They don’t allow for a lavish life and they don’t discourage activity. They do allow me to get Medicare, pay some of my basic living expenses (I can’t afford housing so I live in my parents’ house), and pay the co-pay for my doctor visits.
Like each treatment plan, whether or not doctors complete patient disability paperwork should be decided on an individual basis. Having a policy of never filling out disability paperwork is a one size fits all approach. For most people it isn’t even an issue, but there are a fraction of patients who need this help. I find it hard to believe that doctors are not capable of recognizing these patients. Becoming disabled did not happen to me overnight. It was a progression documented in my medical record. It is fair to expect providers to know their patients and to tailor their care to each patient’s specific needs.
Doctors are tasked with giving their patients the tools they need to live their best possible lives. This includes prescribing medication, giving resources for lifestyle changes, and filling out paperwork. Paperwork that allows patients to change, limit, or leave work while still meeting their most basic needs — food, shelter, and healthcare.
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