When You're Too Sick to Work Full Time but Not Sick Enough for Disability

I am currently 33 years old, single, employed, own my home, car, etc. From the outside looking in, there are many people who have shown jealousy of me and have stated in their own way that I have had my life handed to me. Let me promise each and every reader, I have had nothing in my life handed to me, and in addition my life is not at all as perfect as it may seem from the outside looking in. It never is, is it?

When I was 29 years old, I was having a physical exam by a physician when he felt a lump on my throat. He assured me it was probably nothing and sent me for an ultrasound. The ultrasound showed three masses on my thyroid, so a biopsy was ordered. The biopsies showed two of the masses as benign (non-cancer), and one mass as “suspicious.” They recommended I have a partial thyroidectomy to remove the “suspicious” half and advised me that I would take a pill for the rest of my life. They explained it as the “good cancer” and “no big deal.” Unfortunately, when I had my surgery done, all three masses were malignant (cancer) and had already spread through my lymph system. After much treatment, tests, money and pain, it was discovered that I am also immune to the primary course of treatment they use to treat my type of cancer. My cancer is now listed as a “chronic cancer.” It is simply something they let grow until it gets large enough to surgically remove, and then we do it all over again.

There are many horrible side effects from this. Fatigue, weakness, sleeplessness, pain, nerve problems, migraines, voice issues, dry mouth, hoarseness, lymph inflammation, lack of immune system — I could go on. It has left me with a very poor quality of life.

I am left in this huge area, where I think many chronically ill people are. Too sick to work full-time truly (I average two to three days a week at this point), but not sick “enough” for disability (although I have not applied as of yet).

I have so many people at work ask me, “What are you doing here?” I hate questions like these, coming from people with dual incomes. All I have is me.

This is my biggest frustration — there is no one to give me a ride home after a procedure, no one to help with my lawn (when I am clearly not physically able to anymore), no one to help me even sort my 32 prescriptions when I am weak and having problems with my tremor. Things like this really used to bother me.

I was diagnosed when I was 29. I am now 33. I had to accept that on that day, my life changed. Perhaps others don’t understand my battles or the reasoning for the things I do. But, maybe I don’t understand some of theirs, either. I have found many people are just truly in the dark about many of the challenges that come with different illnesses. For people who say things that are obviously inaccurate or offend me, I try to make a difference and educate them. If I would ask for more compassion from them, I have to give more compassion to them.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.