I met Kylie as a freshman in College, but it wasn’t until our sophomore year that I learned she also has a connective tissue disorder. She has Ehlers-Danlos Type 3 Hypermobility, a condition that affects the tissue in skin and joints. Knowing someone else who also struggles with a rare chronic condition is invaluable and I am grateful that Kylie agreed to do an interview to share her perspective on chronic conditions for the blog. Here are some questions and answers from my conversation with Kylie:

Tell a little about the connective tissue disorder you have. How old were you when you were diagnosed and how did you get the diagnosis?

I have always struggled with pain, but everyone told me it was growing pains. In middle school they told me I was hyperflexible and that was causing the pain. In sixth grade I was diagnosed with an “overuse” injury in my wrist and they had to cast my wrist. My family and I decided to go to a children’s hospital to see if I could get a more specific diagnosis. My mom and I were actually researching on our own during this time and came across Ehlers-Danlos Syndrome. We asked the doctor we visited about it and she sent me to get genetic testing. So in 8th grade, I was diagnosed with Ehlers-Danlos Type 3 Hypermobility (EDS).   

What would you tell someone who is going through that now?

I think that something I have learned is that it is really important to advocate for yourself. It is easy for a doctor to dismiss you when you have something that is invisible and that could be diagnosed as something else. But if you know that your symptoms are something that is deeper than [what you have been diagnosed with], you need to advocate for yourself. [Keep in mind] that doctors know a lot, but they might not know all. Without an official diagnosis, it’s hard to explain what you are experiencing, and you can get so many more resources after you have a diagnosis which makes the process a lot easier. 

What do you feel like is different about being a college student with a connective tissue disorder? 

It is so easy to feel isolated because you feel like no one is going through the same thing but really, if you look, you can probably find someone who is going through the same thing or can relate. It’s also scary to admit what you are going through because people do not always get it. But mostly people do not know how to respond to it because they cannot see [the condition by looking at you]. It is so important to have a support system. 

When you know something is going to push your limits, you really cannot do it [when you have a chronic condition]. Like, I went to Skyzone with [a school group] and had a 2 week recovery for my joints, where a normal person would only take 2 days to feel better. Knowing your limits is really important in college, but so is having a good support system of friends who will stand up for you if you need it. Sometimes I can’t go to things because of my condition. It is important for people to know that they can still invite [people with chronic illness] to things. You never know when someone with a chronic illness can or cannot go to something so inviting them anyway is always appreciated. Even though I have to say no to some events because of my condition, it is nice to feel included. For people with isolating chronic illnesses, being included matters, so surround yourself with people who care about you as a person before your condition. 

Kylie was an orientation leader for our school this year. During orientation weekend she met someone else with Ehlers-Danlos Type 3 Hypermobility for the first time. What was it like to meet someone else who has EDS?

About 1 in 20,000 people have EDS, so I never thought I would meet someone else with the condition. Especially because it is an invisible disease so even if you meet someone with it, you might not know they have it. 

I remember orientation weekend. A girl in the orientation group was telling us about a rare condition that she had. I thought that it was cool that she had a rare disease too, and she was living just down the hall from me. Later, I told her about my move-in and that it was a struggle because I can’t lift a lot of things without my joints popping out of place. She said “wait, my joints pop out too!” I asked if she had EDS too, and she did. 

It was really nice to have someone who could relate. Especially, before spring break, my toe popped out of place and she was able to help me figure out if it was broken or just popped out before I had to go to a doctor. It [gives me] peace of mind to know that I am just too tired to do something [because of my condition], and I am not the only one. The relatability of it is something I didn’t know I needed but has been a huge blessing. 

How are you managing your health in this pandemic? 

Thankfully I am not on any medicines that make me immunocompromised, and I didn’t have any big doctors appointments this year, which is a blessing. But I think the biggest thing is being careful and not getting sick, by using a mask, washing my hands, and practicing social distancing. But something that I have noticed since I am home more is that I am sitting a lot which is not good for my joints. Something that I realized is that I need to go on a walk everyday so my body is not achy. So I think it is important to have good physical practices but also good mental health practices because this can do a lot to your mental health. For me that means taking a walk and being creative. There is nothing that you really can do right now except take care of yourself.