Rebekah Markewich: Beyond My Personal Battle with Ehlers-Danlos Syndrome and More
This blog post is part of a series of storytelling pieces, “Beyond My Personal Battle”. The interview-based series is dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.
What’s your name and health condition?
My name is Rebekah Markewich. I’m thirty-three years old and live in Upstate New York. My husband is an Orthodox priest, I’m a photographer and we have two children who are about to be eight and nine years old. I have Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome, Gastroparesis, and I’ve been getting over a traumatic brain injury. I had a TBI two years ago followed by a concussion the same year; I’ve been stuck in post-concussion syndrome ever since.
How would you describe Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome?
Ehlers-Danlos is a connective tissue disorder which means all of the collagen in my body is made incorrectly. Anywhere that I have collagen (which is everywhere), I can have strange symptoms. It causes a lot of chronic pain, including joint pain, because my body is trying to hold itself together. Ehlers-Danlos is also the root cause of my POTS. My veins are too loose, so the blood pools up in my legs when I stand, causing my heart rate to spike quite high when I stand or do other activities. It makes me very fatigued and nauseous.
Ehlers-Danlos is the umbrella under which the other problems reside. I’ve had strange symptoms my whole life that, previously, no doctor was ever able to fully explain. I had various blood tests and exams but everything always came back fine. We never had an answer until the traumatic brain injury which made everything significantly worse. I eventually found a doctor who was able to diagnose what was wrong.
When my TBI symptoms were more acute, I often woke up not knowing if I was an adult or a teenager. I would forget things quite a lot. I’d always get my memories back, but it was very disconcerting to not know who I was, my age or anything about my life.
How did you reach your diagnoses?
While I was still recovering from the TBI, I was in a car accident and received another concussion. It made me very ill. I had a hard time thinking and I didn’t get better in the normal length of time. I started trying to find answers; I kept hearing about POTS because people I knew had it. It sounded so much like what I had. Ehlers-Danlos Syndrome is more difficult to diagnose because there are so few doctors who are trained to recognize the symptoms.
Consequently, I went for a few months trying to find a doctor. They’d have huge waitlists (sometimes two years long), would very far away and expensive. Then a doctor who specializes in Ehlers-Danlos moved to the area. I have been doing a lot better under his care.
Are these lifelong conditions or can they develop at any point in time?
Ehlers-Danlos is genetic, so I’ve always had it. I’ve had chronic pain for so many years that I did not know it wasn’t normal. I think that happens to a lot of people with EDS. I started having symptoms of POTS when I was 14 – I frequently lost my vision and became very dizzy when standing. Every time I explained it to a doctor, I was told that I was just dehydrated. No one ever took it seriously until it became more severe after the car accident and I started fainting.
During the time spent searching for an answer, what propelled you forward?
There are a couple things that helped a lot – one of them was my personal faith. I talked to my priest frequently. The other thing was art and being able to practice photography. I went through a period where I was almost completely bedridden. I’d get up during the day for a little while but would start feeling sick very quickly; it would get worse if I stayed up. I planned my photos while lying down so that I could easily take them during the day when I felt better.
Art kept me stimulated. I studied photography, read articles, and listened to podcasts. While I was recovering from the TBI, it was difficult to keep my mind focused and even harder to think about complicated subjects. Photography was the perfect medium that kept my mind active without being overwhelming.
I also listened to a few hundred hours of Charles Dickens’ audiobooks. That was amazing.
Do you use your art as a platform for storytelling or as a therapeutic tool?
I like to share my story because I probably wouldn’t have looked for the right doctor if other people hadn’t shared their stories. I love being able to share my story through my artwork and writing because if there’s anyone out there that might be helped by it, that makes it more worth it.
Do you think there are any particular misconceptions or stigmas related to your illness?
Yes! But it is not just for EDS. People with chronic illness often look perfectly healthy and other people can’t understand that they actually feel terrible. When you’ve been living with pain for years, you can smile and laugh right through it. Sometimes you have to cancel plans because you don’t feel well and others don’t understand because you seem okay.
For a while, I even did that to myself! I often thought, “Why am I so tired? I must be lazy.” I would forget that I have several conditions that each cause extreme fatigue. I had a lot of negative self-talk and was probably my own worst enemy. I still struggle with it.
What are some ways that you alter that self-talk?
I ask myself is, “Would I say this to my best friend?” A lot of the time we are more cruel to ourselves than we are to other people. I stop, reflect, and realize I need to cut myself some slack. I remind myself that I might look healthy but I do have these conditions and it’s okay to feel bad. If I’m having an off-day, I don’t have to make myself feel miserable by not letting myself rest when I need to.
How has your condition impacted how you feel as a parent?
My husband works full-time, often from home. When I was recovering from the TBI, he had to take on the primary parental role. The TBI/concussion symptoms were incredibly debilitating. It was impossible to think clearly enough to solve simple problems. Consequently, my kids got attached to my husband doing all of the parenting.
When I started feeling better and coming out of that weakened mental state, I started to take on responsibilities as a fully-functioning parent again. I noticed a backlash from the kids because they weren’t used to me parenting them. A few months for a child feels like a lifetime! I felt guilty because I didn’t want to miss their childhoods. We have a good balance now. My kids understand that sometimes I have to rest. My daughter loves making me coffee when I am not feeling well.
How would you explain your diagnosis to your children?
It is difficult to explain. They understood the brain injury very well. It is more difficult explaining the nuances of Ehlers-Danlos and everything else. It’s hard to explain to adults! I just try to do the best I can.
What would you say are some of the biggest lessons it’s taught you?
That I really need to be okay with asking for help. I’m incredibly independent and asking the people I love for help was hard. I struggled with letting go and accepting the fact that I couldn’t do it all by myself. I realized that I needed to value my self-worth as a person and not by just how productive I was.
I often have conversations with people who are struggling with their own illness. My main advice is to be kind to yourself. If you need to take a break, then take one. Treat yourself how you would treat your best friend.
You can check out Rebekah’s beautiful artwork on Instagram at @rebekahbethany.