In 2003, Ehlers-Danlos syndrome took my career. Until then, I had an amazing job. I made a great income and I was so happy with what I did and what I planned to do. I did not know then what I know now, however.
When I had to walk into my boss’ office and finally tell him I could no longer work, I had been there almost 10 years. That was the hardest conversation I ever had to have. I fought with everything I had to be able to keep my job; I even dropped to half days in the office, then working from home, however it still wasn’t enough. In 2010 my company’s group insurance policy refused to cover me and basically said that if I was on their insurance next year then everyone in the company’s rates would go up, so at that point I could no longer be employed for medical reasons.
I feel thankful and blessed that I made it as long as I did and was able to accomplish what I was able to accomplish. I started out as office manager and ended as almost VP. I was very proud of myself. I had gone back to school, I only had a year left, and then bam, it was gone.
My bosses were amazing! They had been through so much with me — pregnancies, back surgeries, having to rush me to the emergency room a few times, taking me to the doctor when the pain was too bad to drive, and hospital admissions. They understood I was always sick because I had an awful immune system. At the end they even went out and brought me a $1200.00 gravity chair so I could lay back, but the pain was just too much to focus. I wasn’t even able to drive, so my husband would have to take me to work and drop me off. Then by 11 A.M. I was in so much pain from trying to sit that my boss would have to bring me home and help me get up the stairs to my house.
I am sharing this information because it’s very hurtful when people think those on disability just sit around all day and eat bonbons and enjoy themselves. I’ve had people say things to me like, “It must be nice to sit home all day,” or “I wish I could watch TV all day.” They have no idea the amount of pain, the symptoms I have to manage, the nausea, the headaches, the dizziness, almost fainting, joints popping in and out of place. Taking a shower feels like I’ve run a marathon. Even when I am laying here still, I am in so much pain that I feel like I want to cut my legs off. I have to take a ton of medications to even function. So no, it’s not fun. I would love to change it and I would love to work.
People don’t get when you lose your career, you lose much more than just a job. When your body takes it away from you, it’s one of the most frustrating things in the world. You may feel like you lose your independence, your self-worth, your ability to be a role model, your income, the ability to give your kids a good Christmas, and care for yourself financially and physically. People complain about things at work that I would do anything to deal with again. I would do anything to sit in traffic. I would do anything to have a business lunch. I would do anything to have a disagreement with a coworker, or sit in a cubicle, or sit through a meeting. I never even realized how lucky I was until it was gone.
When you see somebody on disability, please don’t call them lazy. Please don’t think they don’t want to work. Please don’t think they’re trying to somehow cheat the system, and please don’t make them feel worse. Trust me, there is probably nothing you can say to them that they have not already heard. A little bit of compassion goes a long way!