In our latest interview, written by the lovely Tara, we talked the strong and compassionate Katie! She discussed her experience with mental health and grief growing up.
Question One: Thank you for setting this up, Katie! I’d love for you to provide some background on your experience with mental health and grief growing up. You’d elaborated in private discussion, but please enlighten us once more!
The week of my fourth birthday, my father died suddenly of Sarcoidosis of the lungs. It went undetected and he was otherwise completely healthy. My dad was my first best friend, we were as close as can be, and the grieving process started off so incredibly hard, of course. It was just me, my older brother, and our now single mother. My mom has always been amazing, and I can realize now how lucky I've been with having her through all of this. Losing my dad so suddenly gave me general anxiety very early on. I developed separation anxiety, more specifically, and clung to my mom like nobody's business for about six years following my dad's death. School became miserable, I couldn't be simply left at a friend's house for a few hours, I couldn't go stay with my own grandparents for a night or two. This continued up until 2015, when I was eleven and around the time that my grandfather went through the long process of dying from a terminal illness. 1(pt2)It was a tough year for the family, watching all of that. I began to fall into a depression in 2016. Those were… dark days. I was becoming more and more anxious and started to lose interest in things I had previously loved. With the help and support of my mom and friends, I started seeing a therapist, and started taking antidepressants. I started getting better depression wise and went into seventh grade feeling good. It was then when I started to get sick. I was getting fatigued and lightheaded, I was having unexplained stomach problems, and my menstrual cycle became very irregular and painful. My mom took me to my general pediatrician countless times that school year. We couldn't find anything. In 2018, I was homeschooled for eighth grade as my health wasn't getting any better. This past school year, I attended in person for the first part of ninth grade, during which finally, after years of no answers, years of pain, years of loneliness, I was sent to a geneticist and diagnosed with Ehlers-Danlos syndrome on Halloween 2019. My new favorite holiday! Though there isn't any treatment for EDS, only symptom management, getting answers and being listened to by doctors was so amazing. It's great knowing why I feel the way I do.
Question Two: What is the full name of your invisible illness, and when did it start to greatly impact your life?
My illness is Ehlers-Danlos Syndrome Type 3, Hypermobile EDS. From 2016 to 2018 I started getting progressively sicker and sicker so there wasn't a specific time where I thought, 'all right, I'm sick now, and I won't be getting better', but I would say 2018 was the most turbulent year for my health.
Question Three: What has been your greatest takeaway while knowingly living with EDS? For those who aren’t aware, how rare is it?
EDS is labeled as 'rare' with less than 200,000 US cases each year, and within those cases, type 3 is the most common. I think my biggest takeaway has been how much energy I DON'T have now. I used to do dance, orchestra, and music lessons all during the week, and still have plenty of energy for school and even some more after that. Now, I do my homeschool work, maybe walk my dog, sometimes I'll go crazy and do the grocery run with my mom, and then I stay home and read and write. I have to be careful, because if I overdo it one day, I'll be out of commission the next day, so I'm pretty strategic when planning when to see friends or when to take babysitting jobs, which I do about once a week.
Question Four: Who have been your biggest role-models or resources in times of unsureness, grief, and healing?
During my depression in 2016, Troye Sivan gave me hope. His music and positivity has brightened my life immensely. I would never be able to thank him enough for what he's done and continues to do for me every day. Louis Tomlinson has been endlessly helpful to me in the never ending grieving process, as he lost his mother too early, and then went on to lose his younger sister. He communicates so much through his music, and does it really well. I discovered him last year and his music, as well as the other boys of One Directions' solo music, has really helped me so much. He sings from the heart, like Troye, and I have felt so validated by them both.
Question Five: What would you say/ask to someone else who is living with EDS?
I like this question a lot, because I have yet to meet anyone else who's been officially diagnosed with EDS! To someone else living with it, I would say that both your mental and physical health really have to come first sometimes. Don't overwork yourself just because you're afraid to say no to somebody. You need to do what's safest for you, and remember to always listen to your body.
Question Six: What words of advice would you give to your younger self?
Younger me was much more of a worrier. I would tell little Katie that things are going to get worse, they just are, and you can't fix it by worrying. You need to help yourself out, you need to be your own advocate, because doctors can't do much for you. You need to stay active, stay positive, and stay close to the friends that try their best to understand you. They will be so crucial to your happiness on hard days. They might never fully get it, but if they try at all, they're good eggs. You'll be okay.
Question Seven: Should mental health and mindfulness education be taught more prevalently in schools?
YES! I can safely say in my 10 years of formal education, I haven't been given any information about mental health by my school, and I really hope that won't be the case by the time I have children. School can cause so much anxiety for kids, it needs to stop being pushed under the rug and dismissed. Imagine a world where kids are taught that anxiety and depression are things that can be helped, and where schools provide mindfulness education resources. It sounds heavenly. Let's aim for that.