The Hidden Reality of Applying for Disability as Someone With a 'Silent' Illness

Before I got diagnosed with late stage Lyme disease, whenever I heard of someone having a chronic illness or a major health issue, I thought it was something that could be fixed. I thought that because we have the science and technology to treat a majority of diseases, that if I ever got sick, I could simply go to the doctor and get treatment. I thought if I got into a car accident, I could go to the hospital and get put back together. I thought that if I needed proper health care I could get a job that offered it to me.

I look back at how simple I thought things were and how I assumed they work in my past and it helps me to understand how others look at my illness now and think it is an easy fix. I have to admit, once I got sick, I learned how the health industry really works and it was a bit of a slap in the face. I felt like everything I thought I knew, all of the judgments I had towards the health care system and how everything worked was a mirage. Granted, these are all exaggerations, but if I knew then what I know now, it sure would have helped.

After my diagnosis, I began working with out-of-network doctors. At the time, I was also on unemployment through the state of California because I thought I would be leaving my job temporarily for six months. That break from work began in September of 2013 and I am still unable to work now in July of 2017. Once my unemployment ran out, I applied for long term disability. I was unable to walk when I went into the initial examination and almost passed out in the waiting room, but they denied me.

I then applied for an appeal and hired a lawyer. I worked with the lawyer for over a year waiting for my court date and when the date came, I was too sick to make it to the hearing. I literally had to hold onto my father who went into the court date with me. Then an occupational therapist listed several jobs she thought I could do in my condition. As someone who worked up to three jobs before being diagnosed, this was literally the most degrading moment of my life. I broke down in the hearing and for about a week later. I was too sick to be verbal at the hearing about the seriousness of my illness. All I could do is show up and be judged.

After the second denial and two years of going through this waiting period of paperwork, I was very upset. I felt defeated and like maybe I should try to work, which I couldn’t do. At this time, I couldn’t drive since my driver’s license was taken away due to seizures. I also had a hard time getting in the car to go to doctor’s appointments when someone else was driving. I wrote in an appeal letter and waited again for another 15 to 18 months. Again, I was denied. Altogether I waited for 35 months to be fully denied. Now, all I can do is reapply and go through the same long process. This is also the short version — this experience was complex and I went through a lot of work, spent a lot of time and a lot of money on paperwork to have a good amount of proof to have a good hearing.

 

This is life with a silent illness. This is one of the things people do not see. This is something someone like myself does not like to talk about because it carries dense stigma. It is not as simple as showing up, doing the paperwork and receiving support. Along with the denial for disability, both of my Lyme literate doctors are out-of-network. This means I pay for everything out of pocket. I had to bypass Obamacare and pay for a PPO plan just to make sure my monthly labs are covered to monitor my major organs each month. The plan does not cover my IV treatments so those are out of pocket as well.

These costs and these treatments that are saving my life have caused me to relocate into my parents’ home, sell my car, and give up everything I have materially to save my life. It is an organic cleansing of all the things I thought I needed into the few small things I actually do. All that I lost is such a precious price to pay for my health and my wellness, but it is not easy getting there.

I do not share this experience for pity, I share it because when I was going through this, oftentimes I felt alone. Being literally judged after you vulnerably present yourself and your illness to many people, legally and on paper is not a great feeling. Of course this goes after years of trying to find a diagnosis and being judged by numerous doctors. That is just the beginning of a diagnosis with a disease like Lyme disease. I see the disease and situation like an iceberg. You see Lyme disease as a whole on the surface, but what you do not see lies below the surface. This is where the politics, the judgments, the healthcare industry and everything you give up to get better is hidden. It goes beyond a journey and more into a complete lifestyle change and this lifestyle change will be something that you carry with you for the rest of your life.

I will say that ironically I am grateful for these lessons. Now I see how things really work and how sometimes the way we are told things work is not how they work at all. I now do my homework. These hard lessons, these eye-opening moments have humbled me. Learning how the world works can sometimes feel cruel and personally it made me feel very naive.

Now when I see someone with a disability, I see the whole picture. I see the partner they are sitting with and know that it takes a lot to stay together through something like an illness. I think of their families and how the illness of a loved one can flow over into their lives, too. I see how years of treatment means lots of challenges and setbacks. I see a hero, I see a brave person who hasn’t given up and worked through all of the challenges and setbacks to get closer to the one precious gift that some people have naturally, their health. Never give up, and when faced with a judgment or challenge, put your chin up and keep on going and know that you are never alone.

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Thinkstock photo by feixianhu