Why My Insurance Company’s Treatment of My Lymphedema Means I’m Suffering

We deal with so many things when chronically ill. There are countless hospital visits, doctors appointments and medication changes to name a few. However, when thinking about chronic illness as a whole, people do not often consider these seemingly little things that annoy us to no end. According to your condition, this can be different for each individual, but the base of it remains the same. We are aggravated by passing ableist comments, a refusal of a family member to be understanding, and much much more. Today I want to speak about the one thing I cannot let go of — the one thing that has me pulling my hair out every time it’s discussed. Insurance.

I have a type of hereditary lymphedema which causes fluid retention in every part of my body. The lymphatic system carries out waste products from the cells and transfers them to the bladder. In my case, this fluid moves very slowly and encounters fibrotic clots along the way. It takes a lot longer to get rid of the waste than necessary. This means that the longer I go with the waste collecting in my body, the sicker I get. There are several ways to combat my lymphedema, but the one that works the best for me is lymphatic massage therapy. A licensed therapist helps to massage the fluid and to, therefore, get it moving out of my body.

My lymphatic massage therapist and endocrinologist specialist agree I need to have this treatment at least once per week. This is where insurance comes in. I have to have a referral providing the reason why I need to have the massage. It takes my insurance company around a month to process this referral and then to subsequently give me around six weeks worth of covered appointments. The problem is that my therapist cannot request more appointments until I have two left. So I am left waiting for several weeks each time, undoing all of the progress we had made. No matter how this referral is worded, they will only give me those six appointments. I am suffering.

Now don’t get me wrong; I am very grateful to be able to receive this treatment in the first place. However, I feel like just another number. One more file in the system. This is the feeling I cannot let go. My insurance knows I will have lymphedema for the rest of my life. So, why is there this need for a constant check — a constant referral agreeing I am indeed sick and was not cured in the past six weeks? It really shows how the system is based. From what I’ve experienced, insurance companies want to make as much money as possible and if they can skimp out on treatments, they will do it. They will do whatever it takes.

It is hard enough living with rare genetic incurable diseases. However, to know the only resource allowing you to get help isn’t on your side is terrifying. I constantly worry that one day, my insurance company will deny my treatments completely. It is difficult to let go of something that is affecting your health and everyday life. To those without chronic illness, my problem probably seems insignificant. I still get treatment, right? Yet they aren’t there to experience those painful flare-ups that my pain pills cannot handle. They do not have to endure the weeks of agony while their body is filling with waste. I truly believe this mindset is one of the big reasons why I and many others “can’t let go” of certain things. We can’t let go, because they can’t understand.