Kristen is in her early 30s and was diagnosed with Fibromyalgia 16 years ago. She started to constantly feel achy with unexplained pain, wasn’t sleeping well, was having lots of fatigue, and joint issues. It’s difficult to diagnose and treat as many people experience this illness in many different ways. Basically the brain is telling you something hurts more than it should as the pain signals she feels are amplified.
She has learned to manage her symptoms and stick to a strict schedule to make sure she doesn’t overdo it, and gets enough sleep. Many people go undiagnosed for a long time, but she feels lucky that she received an answer to learn how to manage her symptoms, work, and participate in things she enjoys. Her wisdom and ability to describe how this invisible illness helps others realize what they see on the outside isn’t the whole story.
Location: Bridgewater, Virgina, United States
Watch the interview:
Notable quotes from the interview:
I look normal and I don’t know how many times I’ve been sitting somewhere thinking I feel awful and everybody has to know it, and then somebody will come up to me and go, “You look so good today, like are you doing better?” It’s much harder to understand something that you can’t see and the person seems to be fine, seems to be functioning.
Fibromyalgia is, at least for me, has been very much a rotation of good and bad days. Sometimes you know I’m doing okay other days I’m doing terrible and a lot of times I struggle with people who don’t understand. They see me one day and I’m fine I’m able to you know hang out with them or go on a hike or whatever and then two days later, they want to do something else and I can’t do it with them what do you mean you were fine two days ago.
It has definitely curtailed what I’m able to do. Basically for me, everything is about weighing the cost; what is this going to cost me… As you said, I know my body and I still get surprised, but for the most part I know what each thing is going to cost as far as… okay, that’s going to involve me staying up late, or that’s going to be me having to put forth significant energy physically and I know those things will cost me.
I don’t want to have to go to bed at 9 o’clock. I don’t want to have to cut my swimming or my activities short, but you know it’s very much respecting your… knowing your limitations first off then respecting those limitations.
I also don’t want to be defined by my illness; I don’t want to be seen as just someone with fibromyalgia. I want to be seen as a person; as someone who likes to read and play with babies and do other things.