My name is Erin Hopkins, and I have invisible illness. No, I didn’t say “an” invisible illness, because (just like so many others) I deal with multiple conditions. It was a long path getting to each diagnosis, and a battle every step of the way (a battle I’m still fighting). I’m hoping that my experiences and outlook on life can help others with their journey as well.
Some back story.
I grew up in a medium-sized city in northern Indiana. My parents were not wealthy, but did everything they could to keep their four kids happy. We had a tendency to move around a lot (within the same city, at least), so I had very little permanency outside of church and family. Once I got into middle/high school, I was able to stay at the same school, even if we moved. It was a welcome change. I made more consistent friends and got involved in clubs. This is when I started noticing some disturbing problems. For years I had pains in my wrists and ankles, but had been told “it’s just growing pains, you’ll be fine”. But once I started playing the cello on a regular basis and singing in the choir everyday, my pain was spreading (and getting worse). How could this be growing pain? It wasn’t as if I had never done anything physical up to the point. I had spent almost 10 years in ballet/jazz, and done theatre as well. But this was very different, whenever I lifted anything heavy, or stood for too long my back would ache. This was very odd for someone in their teens, at least in my mind. Now, this is back in the mid-90’s. Before Facebook and WebMD, so I couldn’t really go on and self-diagnose at this time. I honestly believed I was just out of shape and that I was just crazy. As the years went on though, it got so much worse. My wrists hurt after writing only a few sentences in college. While pregnant, I had to go on bed rest because I couldn’t walk due to pain. Yet, whenever I went to a doctor about my pain, all got were more questions. I got x-rays, MRIs, shots, physical therapy, pretty much everything… but no answers as to WHY I was constantly in pain. Now based on my own research, I knew by now I had Fibromyalgia. But no doctor would listen to me. It took years for a doctor to finally look at my symptoms and (without hesitation) say, “have you had treatment for Fibromyalgia in the past?” I said, wait… are you saying that’s what I have, or I don’t have that? He said “Oh, you definitely have it! I was trying to figure out why no one has treated you for it.” I got up and hugged him!
But that was just the start! Over 10 years ago and I’ve since been diagnosed with scoliosis, IBS, food allergies, bulging disc, migraines, chronic fatigue syndrome, hypermobility (most likely Ehlers-Danlos, getting genetic testing in September), and in the process of testing/treatment for Lupus. Honestly, there might be more, but who’s counting?
What gets to me more than anything else is all the years I went untreated. I look back to my symptoms and they were so blaringly obviously to me! It baffles me that any doctor could miss it, especially the specialists! So I’m on a mission to give us a voice! To say people with invisible illness shouldn’t have to deal with years of wading through the pool of uncertainty and criticism. My hope is to (eventually) get literature into every clinic in the country (the world even) describing invisible illness and what every doctor/patient should know. It will take time, resources, and support. But I believe it can be done!
So, why “The Spot”? Because this is our spot, the place where we can come together. Some of us may have a handicapped parking tag, others are not able to get one. But here, you’ll always have a spot.