Social Security Disability, Medicare and Me

I applied for SSDI (Social Security Disability Insurance) in November of 2016 after my husband spoke with his brother and sister-in-law who are both lawyers. They believed, based on the previous years of employment change due to my depression, I was probably eligible for this benefit. When I looked online and read the requirements I was taken aback. I was apparently the poster child for the most suitable person to receive SSDI. I was scared, stunned and hopeful. My employment history changed dramatically over the course of more than 2 years:

  • I worked full-time managing a volunteer program to then working part-time in this role due to the severity of my illness
  • I was then laid off due to loss of funding for my position
  • I then contracted with a former employer for a few months working 10 hours per week
  • Funding ran out for that contracting position and I was then unable to work at all due to my illness
  • I have been working part-time in retail since March of 2016
I am now earning 99% less per month than what I made when I worked full-time managing the volunteer program.

I have paid into the Social Security system since the age of 14 and I knew I had a right to receive this benefit. I knew I fit the criteria for the employment and medical requirements. The application process is long and was not easy while I was still getting over one of my depressive episodes at the time. It required organization, good record keeping and the ability to gather many documents such as past tax returns, pay stubs, resume, dates of job starts and endings and professional titles. The first step was providing all of this employment history. It was a process of collecting, copying and sending. I triple checked everything I did as I was still not thinking clearly and had trouble focusing due to depression. It was a waiting game and I spent a lot of time checking my online application and calling often just to speak to a human being to be reassured that the process was progressing.

After a few months I received a packet requesting my medical information. Again, there was a lot of paperwork, not only for me but for my providers. My psychiatrist and therapist each had to complete a long form with my history, including dates of medication trials, hospitalizations, treatments, etc. I felt tremendous guilt that they had to do this, after all, I was the sick one who was once again needy for their help. Obviously, I was still not feeling very well. Of course, they did not hesitate in completing the forms and sent them back quickly. Again, there was more waiting and I actually didn’t think about it very often as, statistically, most are initially denied SSDI. I knew I was eligible but I did not want to get my hopes up.

The money aspect of receiving SSDI was huge for my family. We were not in a good place, financially, and for those first years when I was severely ill and making less and less, we were in a financial place of burden and fear. No matter what, our lives were forever affected financially where there was no savings and there was a monthly issue of paying our bills. We lived modestly, only buying food, clothes for our daughter and paying for our mortgage and utilities. We accepted help from our families which felt sad and humiliating. Asking for financial help from our parents (myself and my husband) while we were in our early 40s felt like a bad dream. There was even a time when I thought we should sell our house and either downsize or rent (I never told my husband this). I sold any gold jewelry I had except for pieces passed down from my mother and grandmother. I wrote as much as I could for blogs that paid. We simply needed money.

The notification that I was approved for SSDI in May of 2017 felt like a dream. I read it over and over and started to cry. I couldn’t speak and I kept crying. For all of the emotional, mental hell I was going through this was the light that my husband and I desperately needed. It would provide a bit more financial stability which we had not had for years. We were thrilled and I felt proud that I was benefitting from something that I actually paid into. It provided not just the concrete aide we needed but it was something positive to come from such a horrific experience of four back to back severe, treatment resistant depressive episodes.

I had to learn some new language in dealing with SSDI but it was beginning Medicare coverage that was and is truly complicated. My coverage began in November as required by the government. I had done much reading before and my husband did as well. We had to figure out what to do with my husband’s health insurance through his work as Medicare would become my primary provider. There was a lot of back and forth, conflicting information and confusion while my husband communicated with his insurance liaison.

It’s only been a couple of months and while I am still a bit confused by Medicare, it is beginning to come together for me. I had to stay under my husband’s insurance through work as a secondary insurance for a few different reasons so I have to deal with 2 providers which is not easy. Each needs to communicate with the other and I need to stay on top of that to ensure it is actually happening. They have already set up what is called a “coordination of care” but that takes 60 plus days to begin so until then I have to complete claims from Medicare to my secondary insurance to pick up unpaid costs. It is time consuming and, again, confusing.

My first use of my Medicare coverage at a doctor’s office was interesting. I checked in and told the woman that I now have Medicare as my primary provider. She asked for my Medicare card and while she was not speaking loudly, I felt slightly embarrassed. What would people think looking at me hearing that I receive health insurance through Medicare? Would they wonder what was wrong with me? What judgments might they have? After, I realized it was me who was wondering those things about myself. How did I get here? I was never one to have her life planned out while young but  never in a million years did I think I would be living with the help of SSDI, not able to work full-time in a professional position while receiving Medicare as my health insurance. Why would I have thought this 20 years ago?

Since that appointment I feel more comfortable and talk about having Medicare and SSDI quite openly, not feeling embarrassed or ashamed but proud that I was able to go through a difficult process to rightfully receive the benefits that I have paid into. It is still a bit confusing but I am thinking more clearly and can discuss issues with my husband and make the necessary calls to my providers for answers to my questions.

We continue to financially struggle and when we hear our friends going on fun vacations, we long for the day when we can do the same. All of the projects we want to get done in our home are on hold as they have been for years. We bought our house knowing we could easily take care of the cosmetic changes but that has not been possible. When I see events happening in the community that I’d like to attend, I look at the price and then throw the fliers away as it is not possible to pay. My husband and I rarely go out on “date” nights as going out to dinner and paying for a babysitter is too much. This list can go on but it is difficult to think of and put into print. Our lives forever changed when I first became severely ill in the fall of 2013 and while things are better now, financially, there is a long way to go for us to feel less burdened. I can’t say when that will be or if it will be. All I can do now is be thankful for my current health and for the services I receive that provide some relief to my family.