The views an opinions expressed in these blogs are those of the authors and do not necessarily reflect the views, values, or policies of Spoonie Village or other organisations. Assumptions and assertions in the posts are those of the authors solely.
We are critically-thinking beings, views and opinions are subject to change, revision, and rethinking at any time. Please do not hold the authors to them in perpetuity.
Amanda is 33, loves theatre, art, adventures and travel (this is how she got the tick bite in Austria). She hopes to make the world less isolating for the chronically ill with a new podcast coming out later this year, “Chronic Cast”.
How Trying to Receive Benefits Made Me Feel Worthless
By Amanda Hackett
My story with Lyme disease is not unlike many others. In 2009 I had been travelling in Austria when I was bitten by a tick (and I didn’t know it). It wasn’t until 2017 when I was finally diagnosed with Lyme disease. By late 2016, the severe neurological symptoms had taken over, and I couldn’t feel my legs. I had to leave my job, with no idea how I was going to pay my rent or my student loans once I had used all of my savings.
Once I got to a Lyme Specialist I learned another titbit no one tells you: most treatment for Lyme disease isn’t covered by insurance, unless you’re lucky enough to catch it the day you’re bitten and can get a Z-pack and move on with your life. If I didn’t have my Mom, who was able to use her savings to pay the bill, what would I have done? Developed massive credit card debt? Died?
Eventually when I realised this was not something I would just get over in, say, a year, I surrendered and gave up my apartment and moved in with my Mom, so that was one less expense I had to deal with (I had been living there anyway because I could barely stand up or take care of myself. Again, what would I have done if I didn’t have this support?)
I had heard that it was nearly impossible for Lyme patients to get Social Security Disability, even though it seemed like we should. I met so much of the criteria: from Neuropathy to Panic Disorder, and SO MANY things in between. And yes, I had documentation to prove it all! I decided to try and apply for it, because I really needed the money for my treatment (and those student loans). Also, I wasn’t looking to be on Disability forever, I just wanted a little support whilst I was trying to fight this thing.
I did hours and hours of paperwork and documentation, sending in everything from every doctor I had ever been to see since I got sick in 2009. I included names of places I had procedures, and the doctors who held my records. I included reports of brain scans that showed lesions on my brain, and evidence I had a PICC line placed. I even made an outline of all the data and where to find it. When I asked my Lyme doctor at the time (I see someone different now) for records, she simply replied, “We don’t do that”. What harm would it do to give me a copy of my records?
The next part was a physical exam. I arrived to the Social Security Doctor’s office and realised it happened to be a day I was having tremors, which I thought might actually help my case. The doctor, who didn’t even look up at me, flatly stated, “And you don’t have a PICC line anymore right?”
Honestly I was quite taken aback because all you had to do was look at me to see it was very much still attached to my arm.
“Nope, still here…,” I said, lifting up my arm.
She did an eyebrow raise.
Then came the mental exam. Previously, I had worked in the Mental Health field so I actually felt pretty relaxed here. It was mostly just a depression screening and that “count back by 7s” thing. I have very bad brain fog so this was not great. The Doctor ended with a very sweet comment that he knew I was young and wouldn’t be this way forever. It seemed like he was really on my side and knew I just needed a little support right now. I started to feel optimistic.
Six weeks later I received a letter from Social Security stating, “Due to your age and Education level (young and Masters) you do not qualify for benefits.” Since when does my age or education have anything to do with the fact that I need help? I looked at where they drew records from. They didn’t get them from half of the places I wrote down, not even my Primary Care Doctor.
There are no words to describe how devastated I felt. Gutted. I felt like I was worthless. I felt like I didn’t matter at all. Here I was, with an IV bag tied to me for four hours a day, and I was being told it wasn’t a good enough excuse. In this moment, and I will never forget saying this, thinking it, and feeling it, I understood why the leading cause of death in Lyme patients is suicide. I stayed in bed for at least a week. There was no point in doing anything, because as a person, I didn’t matter.
About a year or so later someone convinced me to appeal the decision. The smartest thing I did was find a lawyer who specialised in dealing with Social Security Disability cases like mine. He did not make me feel worthless. He actually believed me.
Finally, last year, I was approved to receive support. I could finally breathe knowing I could pay my student loans, and medical bills, and save a little for if and when I am able to move out of my Mom’s house. Even though this experience did impact my mental health, I am actually one of the lucky ones. If I was unable to move in with my Mom, and have her help pay my medical bills, what would I have done? I could have died, homeless. There has to be a better answer to receiving support than just an automatic denial because you’re “young and educated” or you don’t believe in Lyme disease.
I wish I could make the people who send out the denial letters realise that when they write them, they are sending them to real people with real problems. And the person receiving it is most likely going to feel like you just told them they aren’t important enough to receive support, or sick enough. It’s nothing to you but you have just turned that person’s world upside down.