It wasn’t a horrific car accident. No diagnosis of cancer. If you saw me on the street, you would have no clue that I am disabled. People close to me know when I’m suffering an attack because they say my face begins to melt. Some of you may laugh when I tell you my medical ailment. Its ok, I’m used to it.
“Take an aspirin,” they say. “Try acupuncture.”
My favorite is when someone tells me that sticking their head in the freezer or drinking a kale smoothie everyday helped their cousin, or aunt or whoever. Good for them. I’m glad it worked. But for me, my disability is rooted deep within my brain. I have chronic migraines.
If you’re rolling your eyes and mumbling “Excedrin Migraine” under your breath, then you can’t possibly understand the devastating pain this monster brings. The definition of “chronic” means that I have 15 or more headache / migraine days a month. In reality, there is never a day when I don’t have some form of headache.
On a pain scale, my migraines start around a 3 and spike each day up to 7 or 8. When an attack occurs, I feel like tentacles creep into the crevices of my brain and take root. The pounding in my head feels like I’m using an ice pick and chisel to break up the roots of pain that have taken hold. Behind my eyes, the nerves are squeezed. My face sags and the lights in my head dim as I try to retreat to a happy place. This happens to 36 million Americans. Four million of us are chronic.
I’ve had migraines since I was five. I experienced all the standard symptoms: visual aura, nausea, photo and phono sensitivities. Back then I needed a dark quiet room, some Imitrex and a puke bucket. Growing up, this scenario would play out anywhere between 1 and 20 times a year. As I entered the workforce, I saved vacation days to use when I had run out of sick time. Most employers understood when I had to quickly vanish before the true pain set it.
Despite the episodic migraines, I thrived at work. I was the youngest Vice President at a small community bank and was named “Top Producer of the Year.” But it was painful to attend the award ceremony. I sat there trying not to lose my cookies and figuring out how I was going to make it back home because my field of vision was skewed. Three weeks before I had achieved this accolade, I had gotten a migraine that never left.
I saw my neurologist who sent me to a half dozen other specialists to find the cause. I amassed two shoeboxes of medications that I had tried, but failed me. I changed my diet and went gluten-free. Physical therapy? Check. Botox injections? Did that too. (It’s an approved Migraine treatment, but it does help my forehead wrinkles!) I consulted with the top headache specialists in the country. I went the holistic way too. Acupuncture, dry needling, yoga, meditation, therapy. Did ‘em all.
During my journey to rid my brain of this never-ending nightmare, I was barely able to work. My company adjusted my hours and work load to accommodate me. Even so, there were many days I was too spaced out from meds to drive to work. My once great memory was gone due to a mix of medications and the constant firing of pain.
I became irritable easily, a huge difference from my normally sunny disposition. If I wasn’t at work, I was working remotely to keep up. If I wasn’t working, I was sleeping. My personal life shrank and I didn’t recognize the person I had become.
This went on for two years. TWO YEARS. No relief, just daily migraines. It wasn’t fair. Not to me or to any one else in my life. Something had to change. My doctor suggested I take some time off work to allow my body to heal. Time off would give me a chance to focus on me, try new treatments, get stronger.
Do you know what your company’s disability coverage is? Maybe at some point during new employee orientation, disability benefits were discussed. But I was 23 at the time and still invincible. I’d worry about that stuff when I got older. Apparently "older" meant now, at age 30.
A year after the migraines became chronic, I talked to Human Resources. If I would ever need to take a few months off, I wanted to know my options. I learned my company provided a long-term disability plan, but not a short-term one. Just to be on the safe side, I bought a short-term policy on my own that would pay me 70% of my salary during time off. But there was a catch. I couldn’t receive benefits for a pre-existing condition within the first 10 months of starting the plan.
So I struggled at work for another year until I could use those benefits. My reprieve had to be carefully orchestrated. Tying up loose ends at work, passing off clients, filling out a ton of paperwork and gathering doctors’ notes just so I could submit a claim. Invisible illnesses are incredibly hard to get approved for any kind of financial assistance.
I was approved for benefits and received funds for three months. Nearing the end of my planned recovery, I was hesitant to go back to work. Not for lack of trying, but my condition hadn’t improved. Actually, it got worse. I would get lost in my own neighborhood. I often couldn’t form a coherent thought, making me look like an idiot. I wasn’t comfortable driving. Any outings were within a three-mile radius of my house in case I needed an escape plan back to bed. Then my hair started falling out due to a medication side effect. My doctor did not clear me to go back to work.
My boss took the news well. I thought for sure I would only need a couple more months to get everything under control. I had used up all my FMLA time during my three month hiatus, so they did not legally have to keep me on as an employee, but they were just as hopeful that I could return soon. Don’t know what FMLA does? You better look it up!
My next hurdle was getting approved for long-term disability. My company offered a private policy as a benefit to all employees. While grateful for the policy, I had to go through the same process of proving my disability in order to get paid 60% of my salary. Right as I was about to run out of money and have to move back in with the parents, I was approved for long-term disability benefits.
I worked even harder to get better. I exercised, I researched, I took pain management classes. But even an experimental in-patient hospitalization at one of the leading Headache Centers showed only marginal improvement. I went through the five stages of grief: denial, anger, bargaining, depression and finally acceptance. My focus shifted from finding out why I was getting these debilitating Migraines to finding tools to manage it.
After a year, the long-term disability insurance carrier required me to apply for Social Security Disability benefits (SSDI). They wanted to split the bill with the government, which is notorious for saying “no” to anyone whose illness is not physically visible.
I hired an advocacy firm to help with the process. I was denied the first time, almost everyone is. But within five months, my claim was approved. Some people spend YEARS in this process. Did you know that the average SSDI award was $1,235 a month in 2013, which equates to $14,822 a year? The poverty line in the US is $11,490! How hard do you think it would be to live off of that? Without the additional private disability insurance offered through my employer, I would never make ends meet.
It’s been four years since this began. It is highly unlikely that I will return to my original career. My mantra has become to “live a fulfilled life while managing chronic migraines.” I am beginning to reinvent myself and have become an active writer and advocate for migraine patients. I hope you never have to be in my shoes. But maybe at least this article will make you double check your employee handbook to understand what your financial options are if you are ever realize you are no longer invincible – no matter what your age.