Sometimes I Wonder What It Would Be Like If I Never Got Sick

Sometimes I wonder what it would be like if I never got sick.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

What would it be like if I was not born with this gene, causing me to be sick since the day I was born?

As a kid, I never knew I was sick. I knew something was wrong, and that I was in a lot of pain with multiple health issues.

But at the time, there weren’t terms like “spoonie” or “zebra,” and there were no online support groups.

I was confused, but I didn’t realize I was ill until middle school. That’s when I started to figure it out. There were things, even back then that I wanted so badly, but my sickness took away from me. I wanted to be a cheerleader and tried out a few times before I made it. I would get sick and have to drop out over and over. Then when I actually did make it, I had to again drop out from the pain and internal issues. The day everyone left for camp, I was in the hospital with a 105 fever and had dye running through my veins. I could not go off to college because again, I was just too sick. At one point, I was even a model, but that was short-lived. It was a huge accomplishment when I was offered a contract, but I had to walk away and be under the care of my mom.

It made me learn from a young age that I could work hard at something, get it, and then lose it because of my body and illness.

I did have a few bearable years where I was able to build my life. I had an amazing job, that again, I worked my way up for. I loved it and had a great salary. I know most people hate Monday mornings, but I loved them. It meant I was able to go back to my office. When I was not at the office, then I was working from home. I was sick and in pain most of the time, but again it was bearable. I now know this meant my Ehlers-Danlos syndrome (EDS) at that time was high-functioning. I had even gone back to school and was almost finished!

Then it hit — the first back surgery, and then the second. I was able to work through two of them, but I was never, ever the same after July 6, 2003.

I will never forget that day.

That is the day I was told I would be back to my life in six to eight weeks, but things went wrong, and I still don’t have my life back. As I have gotten older, more complications have come along with EDS, so there is no way, even if my back did not take me out, that I would still have my job.

So I wonder sometimes, what if it never happened? I actually will cry if I think about it too much. I think about all the things I could do with my kids and for my kids. How I would have an actual wardrobe of clothes, instead of pajamas. I think about what it would be like to go to one of my business lunches again and just be able to eat! I even think about driving to work and fighting traffic. These are things healthy people don’t often have to think about.

I don’t think I will ever stop thinking “what if,” but all I can do is deal with “what now.”