Guilt by Lacy Chambers

Living with a chronic illness creates A LOT of guilt. Whenever I am having a bad day and rest and don't do anything around the house I lay there feeling so guilty about not helping out but I know I physically can't. I look around at my house noticing things that need to be done, but don't have the energy and am in too much pain to do anything about it. I wish that I was "normal" and could do things anytime I wanted.
I also feel guilty when I don't feel up to going out and doing things. Sometimes I cancel and feel horrible, other times I just go and feel horrible, but those are two different types of horrible. I hate committing to things, and then having to back out and not do it because I can't walk or because of something else that is going on. I always feel bad that I mostly just sit back and watch the world going on around me and can't participate. Watching the fun is great, don't get me wrong, but being able to be in the fun is so different.
I have guilt about my kids having EDS because I passed it on to them. Now that my health is so rapidly getting worse I worry about their future and what EDS means for them. When I was a teen they tested me to see if I had genetic markers for Vascular EDS, but it came back negative so I was diagnosed with Hypermobile EDS. My Dr. at the time wanted me to be tested before I thought about marriage or having kids. It was such a relief to know I didn't have that kind. Now because we know more about me medically my Geneticist thinks that I have Vascular EDS even though my previous test was negative. Now they have more genetic markers to look for and better testing for diagnosis than they did when I got my testing so they want me to be re-tested. The life expectancy for someone with Vascular type is only 45 years. I am now 32, what daunting news. And again, what does this mean for my kids? If I have it, they do to. I can't say that I wish I never had my kids, they are 2 of the most amazing people I know. And maybe, just maybe people would be born how they are born no matter what. So in that case, my kids had to be born and come to Earth, and if my theory is true they would have still been born with EDS but possibly to parents who know nothing about EDS. Since I live it, I am better equipped to empathize with them and help them through their life challenges along the way. If I had known I had Vascular type when I was a teen would I have adopted, never had children, or still had my children? There is no way to know but what I do know is that I am so grateful that they are here and that they are mine. That however doesn't take away the guilt when they are in pain or get injured because of the disease they got from me. There is a 50% chance of passing it on, and both of my kids got it. That is not the greatest odds.
I feel such guilt having such severe health problems all the time. If I was healthy we would have so much more money because we wouldn't be spending all of it on medical bills. My husband works so hard for our family and I am so grateful everyday that he can go to work and that he does such a great job supporting us.
One thing we have learned recently is to cherish every second we have together because we don't know how long I will be here for and what my health condition will be like. What a blessing it is to live like this, you don't want to wast a moment on anything that isn't worth it. My relationships have gotten so much stronger. Life is a process, there is no way around the guilt but there is a way to still feel joy.