Hello zebras and spoonies! Thank you for coming. I’m glad you’re here today.
I want to address a question that was raised in one of my support groups on Facebook and basically the question was, if you could go back in time and get diagnosed sooner: would you do it? I think that’s an interesting intellectual exercise.
The first thing to mention is that the majority of us with chronic illness are not diagnosed promptly, even if it’s a genetic disorder, many of us wait years to get a diagnosis, and then oftentimes that diagnosis is changed multiple times before a really definitive diagnosis is settled upon and we can kind of feel like yeah “this is, this is probably it,” and it doesn’t change. So that process can be frustrating and it has a lot of implications for our long term health, well being and a lot of the choices that we make, over the course of our lives.
So when we talk about getting diagnosed earlier. It’s a really interesting and complex idea. And I won’t deny that if I was actually presented with the option of going back in time and changing even just this one thing: I would very much be tempted. But I think in the end, I would decline. And I think that it comes down to the reality of the watershed events in our lives. When we make choices in our lives some doors open and some doors close. We’re not usually really aware of what opportunities are closing when we make choices. So it’s difficult to say what things I would have done differently if I had gotten a diagnosis sooner.
I mean I myself was diagnosed with EDS, when I was in my mid 20s And that diagnosis led of course to all the other diagnosis of the comorbidities that are very common with EDS but really everything centers back to EDS, for the most part. So, would I want to be diagnosed with EDS sooner? I mean, in a perfect world? I think that it is fabulous for everyone to be diagnosed as soon as possible so that they can make the best health choices that they possibly can for their long term life and health trajectory. When you’re looking at a chronic illness or genetic disorder like EDS, these are things that don’t go away. The sooner that you know what it is that you have, the sooner you can start making life choices, and start managing your disorder or disease in a way to minimize the long term consequences of that disease and disorder. So on a basic principle I think that the idea of having an earlier diagnosis is a good one.
But I don’t think that I myself would want to go back in time and change anything because I don’t know what else would change. As hard as my life can be sometimes having chronic illness, I overall love my life the way that it is. And the reality is that being diagnosed sooner would not erase the fact that I had EDS. It might have made it less severe in symptoms at this point in my life had I been diagnosed as a child. But would I have really made the best choices had I been diagnosed? Well, I really don’t know the answer to that because it’s complicated. I have ADHD and that really involves a lot of impulsivity, so being a kid would I have really made good choices, or with the impulsive ADHD brain won? It’s hard to say.
But I wouldn’t want to risk losing some of the really cool and amazing things that I have going on in my life right now in order to get that earlier diagnosis. I met my husband when I was very young and we have an amazing daughter together and those are definitely two things that I would not want to risk changing. I also wouldn’t want to risk changing having become a nurse, and it is entirely possible that both of those things could have changed. Had I been diagnosed sooner I don’t know that would have chosen to become a CNA. It’s a very physically demanding job, and one that comes with a lot of risk for injury for a normal person, let alone for someone who has connective tissue disorder. And I met my husband when I was getting my education to become a CNA. Had I not pursued the healthcare career, the path of CNA and RN, I don’t think that I would have ended up meeting my husband, and that is something that I would regret not having in my life. And I definitely would regret not having our daughter in our life.
I think that it’s interesting when you think about how the pieces in our lives fall in place and how things that we think might be negatives might actually have been a good thing, like my being delayed in my diagnosis, allowed a door to stay open and allowed me to meet a really amazing person who I am very grateful is in my life. It also allowed me to choose a nursing career whether or not that was physically the best choice for me. I don’t know it’s debatable. Would I have still chosen this career? I don’t know it’s hard to say. But those doors definitively stayed open, Because I didn’t know that I had EDS. So, I don’t think that I would want to go back in time and risk closing those doors.
So what about you guys, do you think that you would want to go back in time and get an earlier diagnosis if you could? Well, thanks for engaging in this thought exercise with me and until we can hang out again you guys take care of yourselves.