Resilience in MS

Applying for disability is a stressful and daunting process. To say I am thankful that got approved is an understatement, it was a huge weight lifted. But it took 3 LONG years. It started in 2017.

By the time I was finally diagnosed with RRMS, I had racked up quite a few medical bills. ER visits, CAT scans, MRI’s, multiple doctor appointments and medications. We didn’t have great insurance, some of those things were covered, but not all. Any extra money we had was slowly disappearing. It was going out faster than it was coming in.

I started working at the age of 14. I worked part time through college. Once I graduated, I had many different types of jobs. Trying to find my footing in becoming an adult. By the time I hit my mid 20’s I was making a considerable amount of money. Over the next decade or so I was really building my social security fund. I never gave it any thought, just one of those governmental payments we all make. At 42 I realized how important those payments were.

By 2012 after my second daughter was born, I said goodbye to full-time work and went part-time. Being a stay at home mom was always a priority for me. I didn’t want to miss a thing when they were little. My husband was making enough to cover our bills. Any money I brought in was just extra, our cushion, our fun money.

Skipping ahead to 2016 & 2017 when my symptoms started, I wasn’t able to work. I could barely take care of my girls and myself, much work. After several failed attempts to get myself to work and be there for my full shift, I wound up quitting. All of the sudden, after almost 30 years of being a reliable, dependable, all around excellent employee, I was FAILING. It was both frustrating and heartbreaking at the same time. I knew it was time to focus on my health and my family.

By the end of 2017, my lack of income was beginning to be a problem. We simply didn’t have enough coming in. My husband and I would continually argue about finances and it became a hot button in our house. I was trying different things to bring in extra cash, but it was never enough. Without the extra money from me working, we were sinking.

In “The Mental Toll of MS” post, I talk about the guilt I felt throughout my 8-year journey. The financial pressure on my husband was tremendous. He was the only one bringing in money. I began to feel worthless and guilty. Worthless for not contributing to our finances and guilty for spending any money. It was a new feeling, I had always been able to take care of myself financially. Losing that independence was miserable.

I started the process of applying for Social Security benefits. Everything I read indicated that Multiple Sclerosis was classified as a disability. So, this was something that would get us out of the financial hole. We were optimistic about it. I remember sitting with my husband at the kitchen table filling out the extensive amount of paperwork. He had to do all the writing, because the neuropathy in my hands was at its worst. After answering all the questions and getting the paperwork completed, we were hopeful. Their was a glimmer of relief in my husband. We figured I was a shoe-in for the benefits.

After 6 months, it came back and they rejected my application. They wanted more information. Between the ongoing decline of my health and the financial burden, my marriage was suffering. The feeling of worthlessness was taking hold.

After researching the topic and reading peoples experiences, I realized it was typical to be denied the first go around. So I started the appeal process. This time including notes from my doctors saying I did in fact have MS. And adding results from various tests I had undergone. The second round of the application the process is even more detailed. I sent all the information in, and waited. Another 6 months or so went by and again I was denied.

Now not knowing what to do and feeling like a burden and financial drain to my family, my self worth was in the gutter. I didn’t want to fight anymore. The disease was winning, my marriage was in shambles and financially things were so grim.

My girls were the only thing that kept me hanging on. They were the reason I got up in the morning, the reason to keep fighting. They were my purpose, they were my blessing.

So I decided it was time for me to return to work. My health wasn’t any better, but I figured I’d push through and contribute. At least at work I felt worthwhile, useful. But it only lasted a few months. It was just too much and my body was not having it. It was during this time that my legs started to give out and walking became a challenge. And doing the amount of standing that my job required was impossible.

My husband and I decided, it was time to find a lawyer. Once she thoroughly reviewed my paperwork she thought I had a winnable case. She filed the appropriate paperwork. This time around, SS required me to take a cognitive test. The doctor was someone they chose. My brain fog was pretty prevalent at the time. If you know you know. If you don’t, brain fog is described as the inability to think clearly, focus and or concentrate.

Going in to the appointment, I didn’t know what to expect. It took about an hour. The doctor who administered the test was a very kind, elderly gentleman. He asked me various questions, had me do some written work, and I took some memory quizzes. He said to me at one point, “You went to college right and got your degree?” As if that was difficult to believe considering how poorly I was doing on his tests. I left that appointment feeling humiliated and for the first time, stupid. My life was spinning out of control and their wasn’t a damn thing I could do about it.

After all the paperwork was collected, tests run, it was time for my day in court. I had never been to any type of court before, so I was extremely nervous. My attorney was there as was a representative from the Dept. of Social Security. My attorney spoke on my behalf, I think the judge asked me 1 or 2 questions. The representative from SS didn’t have any questions. The judge took maybe 2 minutes, looking over my paperwork and apologized to me for having to show up at court. He said he would render his decision in a few days.

I wasn’t sure what the outcome was, so I asked my attorney and she assured me. She said “You won!” I called my husband immediately, he was so relieved and joyous. I could feel through the phone, the weight lifted from him. It was a good thing, it was something I fought for and I should have felt relieved and joyous too. Yet, I sat in the parking lot and cried. I didn’t really know why at the time, just that this sense of sadness and loss came over me.

That feeling remained, well past the time when my monthly payments started coming in. The financial burden that my health had caused was gone. I was now contributing again (so to speak) to the financial needs of my family. My husband was no longer angry and stressed. Everything seemed like sunshine and roses, but inside I was struggling. The 3 or so years it took to get approved were dark years. The belief that “money fixes everything” is bullshit. It didn’t fix the damage done to my self esteem, my marriage or my health. But it did take away the pressure we had felt from the beginning of my diagnosis, which was not nothing.

My advice: don’t give up. I believe the system is made to be difficult on purpose. I’d paid into SS since I was 14. It is my hard-earned money, and fighting for it, because I needed it, was crucial. The reality is that getting approved for those benefits was life-changing. Medication is expensive, living with MS is expensive, and although it’s not a ton of money, it’s enough for us. So if you find yourself with a debilitating disease that qualifies you for Social Security benefits, fight the fight. Don’t give up.

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