Bethany has a condition known as Ehlers Danlos Syndrome and this is her story of not letting it slow her down.
What is your life story?
I was born with a genetic condition known as Ehlers Danlos Syndrome. EDS is a connective tissue disorder. My case is systemic and comes with a lot of other conditions associated with it that cause issues with eating, allergies, walking, building muscle strength, and a bunch of other stuff. Despite being born with EDS, I wasn’t diagnosed until I was nearly eighteen years old, after dealing with symptoms that we couldn’t explain or control.
Even though it is not common in EDS, I slowly lost my ability to walk over the past few years and I am now completely wheelchair dependent, requiring the use of my wheelchair 24/7, even when I am in my house. I live in constant chronic pain due to joint dislocations and injuries, as well as spinal problems.
After losing my ability to walk I developed severe depression and had to start antidepressant medication. It took a while for me to come to terms with my new “normal” and to learn that disability doesn’t have to be a bad thing and your life can be just as full regardless of how your body is physically. I’m very thankful to all the other disabled folks that have taken the time and energy to share their stories online because seeing other people like me out and kicking ass has really helped me accept myself the way I am.
How have you dealt with EDS?
The biggest things that have helped me cope with my condition is the amount of love from my family and my husband, and learning to cope with changing symptoms from day-to-day. It took a while for me to come to terms with the fact that I would never feel one hundred percent okay and that was my new normal, but once I learned to accept the fact that I couldn’t control my body it became a lot easier to deal with my condition and it’s constant changes.
What kind of things did you go through growing up with these conditions?
Because my condition is genetic, I had symptoms throughout my entire childhood, but I wasn’t diagnosed until I was nearly eighteen. So growing up I had a lot of unexplained “problems” with pain, migraines, nausea, appetite, weakness, etc. I had very weak muscles as a child and would struggle to do things sometimes like tying my shoes due to fine motor skill problems. I was thankfully homeschooled for most of my school experience.
When I was a teenager I got fired from one of my first jobs because I couldn’t lift or carry heavy items and due to not having a diagnosis I couldn’t request accommodations. So I just got fired for not being able to do something that my body physically could not handle.
Just dealing with symptoms on a daily basis and not being able to express or know why I was having them was the consistent theme of my childhood. It was very nice to finally get answers when I was older, but unfortunately only after the damage had already been done.
What would you say to others dealing with similar things?
I would say to find the fine line between listening to your body and pushing yourself. Find things that challenge you, but that you can also do with your limitations. Having a passion for a hobby or activity that works well with your body can really help when coping with disability. It’s also nice to know that you and your body can coexist, not fighting with your symptoms but finding things that you can do with your body, even if it has to be adapted. Just learn to work with yourself, instead of pushing too hard and ending up worse than you were before you started.
Also, be sure to build a good support system. Make sure you have some family or friends that understand what you’re going through and are there to help you. Build the community and find kindred spirits and bodies cause just making those connections can really help you.
How would you inspire others?
I love using my social media to help show people that you can love your body no matter what! There’s not a lot of representation of disabled bodies in the media so I really love to post photos of myself in my chair or talk about disabilities, because I think the biggest way to help people love themselves is to get to see their bodies in somebody else.
But just as a general crowd, I think everybody needs to be appreciative of what their bodies are doing to keep going and just love yourself, regardless of how you look or feel.
What is your outlook on life?
I’m not sure! I feel like my outlook on life is always evolving and changing cause I try to keep an open mind. For the most part, I try to keep my outlook positive and loving, but I also let myself feel emotions of sadness when I need to as well cause I feel like you can’t have light without the dark. I always try to find the bright side and remember to keep pushing on!
The interview took place on 10/2/18
Let’s inspire the world – Wasilly