Never did I start my career thinking I might someday become totally disabled. I didn’t want to stop working. I loved my work it was challenging and rewarding and I helped the community. I was making a difference in people’s lives. I had a bachelor’s degree and a paralegal certificate. I had invested a lot in my career and I still had things I wanted to accomplish and contributions I wanted to make. At age 45, I wasn’t ready to retire but my multiple sclerosis was completely flared and my health was declining. My doctor had ordered me to take a medical leave from work and I was certain I would return healthy and able to work again.
Luckily, my employer had a short-term and long-term disability plan and my doctor filled out exactly the paperwork I needed to start receiving short-term disability benefits. I was approved in just days and I spent most of my days resting and trying to recover so I could return to work as soon as possible. I returned to work in six weeks. I wasn’t ready to return to work and I was barely functioning. I was a complete mess and would cry in the car on the way to work and the way home from work out of pure exhaustion. I got through a week and finally had to call in sick and see my doctor. I went from a cane and wall walking to barely walking at all. I called the short-term disability company to let them know I was back out on leave and I thought my short-term benefits would kick in again. To my surprise, they discontinued my benefits. I was frightened knowing that my doctor was telling me I should look into a medical retirement. She referred me to an attorney.
I knew in the back of my mind I would not be able to return to work; after all, I was a wife and a mother and over the past years my husband was taking over many of the household and childcare responsibilities. I was doing less and less simply to save my energy to push through my work days. I wasn’t my best at work or at home and my husband called me his “two hour wife.” Basically, I spent two hours with him per week, if I wasn’t at work or rushing around with the kids then I was in bed asleep or sometimes asleep on the sofa too tired to make it to the bed. At this point, with my doctor’s recommendation, I knew I needed to start researching disability benefits.
I called my local MS Society and studied their websites and the MS navigators pointed me in the right direction. They reviewed my rights within the American Disability Act to see if my employer could make any accommodations to my work schedule or environment. I also read and reviewed the Social Security website. At this point, my doctor and I knew that I could not return with any accommodations as I was just too sick and fatigued to function. Getting out of the house was a big project, yet alone working a work day. I started documenting everything and tracking my symptoms. It was frightening to see how much MS had impacted my life. I would need to provide this information to the insurance companies and Social Security.
The disability lawyer talked with me and my husband and prepared us for the long and tedious process of applying for disability. He told us there would be many months without money and the stress would be high. He also stated that almost never was the short-term disability denied or discontinued and this was a concern. I really had no option at this point, I was barely surviving at home, in my daily routine, and working was out of the question.
The attorney had my doctor write a detailed letter documenting my disease and how I had regressed and was unable to function. He also recommended I see an occupational therapist to have a functional capacity evaluation done that I could submit this with my application. I met with her twice as she tested and timed me, asking me to do small tasks. I was too sick and weak to do many of them. She then wrote a 20 page paper on how I performed and had my coworkers and supervisor write letters detailing how they saw me at work in the past six to nine months; unfortunately, they had seen my decrease in productivity and some of them were picking up the slack for me as I was too sick to complete my duties.
Social Security Disability (SSDI) has two ways to speed up the often very long process. The first is a “compassionate allowance”, and you have to have a terminal illness for this. The second is to qualify under “List A” – this list is of conditions that are very severe. MS is on the “A” List and under the three conditions listed I had two of them. My attorney helped me submit everything needed for Social Security and put together a packet for the short-term disability insurance to appeal the discontinuation of my benefits. Finally, after submitting everything, it was a waiting game. The key to all this documentation was to be very detail oriented. I meticulously documented everything and filled out all the forms with great detail. I had my mother and husband double check my work.
In the meantime, while waiting for the decisions, I was trying to redefine myself. I had always worked but was finding myself enjoying my newfound time with my children. They are teens and I have found they need their mom home with them now just as much as they did as small children. We have lots of time to work on homework and talk about their day and navigating through junior high and high school.
I have physical therapy twice a week. I can nap during the day, which helps with my symptoms and energy. I am reading a lot as well. I l have good days and bad days as anyone with MS can relate to, and now I have time to rest and recover. I don’t have to push my body like I did when I worked. I will have to very closely monitor my health from this time forward. I am still using a walker.
I have spent time talking with friends who didn’t define themselves by their occupations — women who once had high-powered careers but have taken a step back to find balance as their lives changed. I tried to surround myself with women I knew and admired who had recently filed for disability and were no longer working. I wanted to see how others replaced the void of not working outside the home.
The approval process was definitely a lot of work. I tried to prepare as much as possible and did everything either I had read about or my attorney told me to do. Luckily, I was quickly approved for Social Security benefits, which allow me eligibility to draw a medical retirement from my employer’s retirement plan. I am still waiting to hear about the appeal for the discontinuation of my short-term disability.
Filing for disability benefits can be very stressful and hard to manage, but knowing there are many resources out there that can make it manageable and successful. Are you on disability? Was it a challenging process for you?