Self-Worth

Hello and welcome back! If it’s your first time here, I hope you may learn something new about disabilities, or maybe even gain a new perspective of your own through hearing mine as a person who has lived life with a disability. Thanks for being here!

Many of my earliest memories are that of being at a doctor’s office, or recovering from surgery at a hospital. If you are someone who has spent time seeing doctor after doctor, year after year, you know the familiar feeling of feeling like you are just a number. Just someone else for them to check off their list for the day was how it often felt. Too rushed with their own agenda to have time to really listen to mine. Those experiences didn't exactly leave me feeling dignified, or promote feelings of self-worth. Neither did being referred to as unidentified for 44 years of my life. I did have a few heaven sent doctors over the years. The doctors who actually encouraged me to realize, I did in fact, have a place for self-worth in my life. They saw the real me, and by that I mean, they saw how I was reacting to living with my disability. My drive to live. They saw the whole me, not just a piece. Though not in their job description, they actually made time to basically say, “hey you matter." For me, since those times were a huge part of my life, that was important to developing self-worth, and it felt like it really mattered.

Living disabled, there are so many times when you feel like you don’t matter, or your needs are a nuisance. I understand that most of you reading this couldn’t fathom treating someone with a disability this way, but it’s real and it happens often. Lesser than. A huge trigger for me is when I’m in my scooter at a cross country meet, and trying to watch my son cross the finish line along with all of the other families. Time after time, I pull my scooter up to a space where I think a person couldn’t possibly step in front of it. Then, it happens. Someone steps right in front of me, completely blocking my view. It’s truly unbelievable and sad how often things like that happen. I feel invisible when that happens. You may be thinking, why don’t you just say, "please move, you just blocked my view?" That sounds like an easy thing to do, but it’s not for me. Also, whether it’s intentional or not, it’s still upsetting. It’s easy to feel your self-worth dwindled down to nothing in those moments. Instantly. 

Another thing that stands out to me is when I’m being pushed in a wheelchair, for instance, at an airport where someone other than a family member is required to push me. So many times I’ve been parked facing a wall, my back towards all the other passengers.  That makes me feel like I’m disposable. That is a terrible feeling. Again, even if it’s not intentional, it hurts. I question my self-worth while trying to maintain my dignity in moments like these. It’s painful. 

Maintaining my dignity and self-worth is ultimately on me, not based on what others do to me. Their actions don’t have to affect my self-worth. I used to think they did, but they don’t. It didn’t really matter what my doctors thought of me, or really what anyone perceives me to be as a disabled woman. I’m not sure those moments will ever not sting, but I can try my best not to let them have a lasting impression on my mental state. It’s hard to hold your head up high and continue on when you’ve been repeatedly diminished as a person over the course of a lifetime. I will tell you though, it is possible. Feel the feelings and then move on. Don't stuff, feel. Educate where you can. Know your own truth, and believe it wholeheartedly. Stay humble, not angry or bitter. 

It goes back to what I said in my blog post titled "The Meaning Behind Humbly Courageous." I said, "When you are forced to be courageous in an everyday battle, humility is inevitable.” Live humbly courageous. That’s what I do my best to live by. 💚

Bethlem myopathy fact: Bethlem myopathy affects about 1 in 200,000 people, which classifies it as a rare disease.