We all know living with an anomaly can suck, no matter what it is. Throughout my life experiences so far, I’ve learned several lessons that over time have helped me rebuild the parts of my character that so often got torn down from the tough times. Though this may not apply to all since everyone has their unique journeys, here are a few lessons I’ve learned that might provide encouragement for those needing it.
(And this doesn’t have to only apply to those with rare diseases!)
1. Appearance isn’t everything
In this day and age, it often seems like the world cares tremendously about the way everyone looks, whether it’s on the street, social media, etc. Social media platforms pretty much exist purely to show off appearances and pass off the illusion of perfection. Most people on these platforms try to look absolutely flawless in their posts and measure their confidence based on the amount of likes and comments they receive. And in real life, the standards aren’t much different. It’s a tough world out there.
Let me just throw on top of that the people living with disfigurements, whether from a rare disease, a birth defect, or any other cause. In a world already laden with harsh judgement and materialism, they have to go through even more of a difficult experience living with visibly noticeable imperfections that often cause unwanted attention. No one will really understand their struggle in this world today except for them. For me, the endless stares, points, and laughs I get throughout my days feel like punches to the gut almost every time.
Though it’s been difficult, what I’ve learned from going through this experience is to not let all of that get to my head and be comfortable in my own skin because this is who I am. I’m not going to change. I was born with a genetic, chronic disease that is irreversible. I can’t change it. I’ve learned to not worry about something I cannot change, similar to realizing not to worry about the past because you cannot change it. This part of me, this disease, is not going to change. While it took time, and it may also take time for others, at some point finding that acceptance will bring so much peace. It did for me. Removing those feelings of shame to make room to love yourself and your body is such an important step to make in life.
It may be difficult to reach that level of acceptance, but let me tell you–it will bring so much peace. Not worrying about what others think and feeling totally and completely comfortable in your own skin is exhilarating. Learning this lesson has been incredibly important in my life and in reaching a healthy mindset. Appearances are not everything; your comfort in your own skin is. I know this may be different for everyone–everyone is on a different journey and hits various victories along the way at different times. I just think it is so important to articulate that working on yourself for yourself is so much more important than working on yourself to please others.
2. People are going to stare
This is one of the harshest truths I’ve ever had to come to terms with. You don’t want it to happen. It’s probably one of the worst parts of living with a difference. But unfortunately, it’s going to happen. We can’t control who is going to look at us or how they’re going to look at us. It’s just one of the difficult experiences we have to fight through in our lives. I spent so much of my life feeling that horrible drop in my stomach every single time someone stared at me. This is just something that we have to come to terms with at some point in our life. It’s not easy, and some people may not ever really feel comfortable enough in their bodies to get past the unwanted attention. It’s very difficult to be okay with the staring because it’s never okay. No one should ever have to acclimate to a lifestyle of relentless stares–it’s not something anyone should have to go through. So that’s why it makes this whole experience so difficult.
But what I’ve come to realize is that no matter what, it’s going to happen. We can’t control how people look at us or perceive us, and if people want to make those ignorant actions and judge us before they know us, then we shouldn’t worry about it because they aren’t worth it. I’ve realized that what matters most is my comfort and my ability to accept myself. Yes, people are going to stare, but as long as you’ve accepted yourself and your body and know there is more to you than how some people perceive you, those stares mean absolutely nothing.
3. Asking the question “why me” will only lead to more questions
I can’t tell you how many times I’ve shaken my fists at the sky and asked why me? Why was I one of the few 200 people born with this ugly, painful syndrome? The amount of times I’ve demanded an answer to this question is endless, but I’ve reached the understanding that there is no answer to that question, and if we spend the rest of our lives looking for one, we’re only going to hurt more.
So far, life has taught me it’s not about why. It’s not about what caused it or who is to blame. We were put onto this earth the way that we are–that’s it. We learn through living as we are; we become stronger through suffering as we are. Maybe we were born like this to help others like us. Maybe we were born like this so that we know not to take certain things for granted. Or maybe we’re supposed to come up with our own answer to this question once we’ve lived enough, hurt enough, and learned enough. No matter the reason, this is how we are.
We learn through our experiences, and I’ve learned that why we were born this way doesn’t matter. If anything, being born this way has made us tougher because we’re fighting through and overcoming hardships that most other people in this world don’t have to go through. That makes us so much stronger. When you’re able to realize that there is no answer to the why’s, you can stop trying to find the answer. You’d be surprised by how much peace putting those why me’s to rest can bring.
4. Never stop leaning on the ones who care about you
One thing I’ve known going through all the difficult experiences of living with my disease is that my family and friends will always be there. They have always been the constant throughout my life no matter what happens. While I’ve been able to buck up at this point in my life and go through life head-on, I know that I wouldn’t have been able to get there without the support of my loved ones. Growing up, my family and friends were always there for me. They never looked at me like I was different, and they always protected me when I faced challenges regarding my disease.
What I’m trying to say here is that one thing that will always remain constant in your life is the ongoing support of the people in your life who care about you, no matter who that may be. Obviously, living with a rare disease is going to bring on endless complications, and while there are coping mechanisms out there and other strategies to help you get through the hard times, support will never fail. Support is the most important thing, I believe. It may be the biggest lesson that I’ve learned here. Never forget that there are people in your life who will always be there for you through the hard times to pick you up when you’re feeling down. Don’t stop leaning on them.
5. Meeting new people isn’t as scary as you think
All my life, meeting new people scared the crap out of me. Every time I encounter a situation in which I’m meeting new faces and introducing myself, I know I’ll get those weird looks or questions asking what did you do to your foot? Going to school, work, and social events always brought on the fear that I’d have to experience yet another uncomfortable situation of answering that question. I almost quit a job because of this very reason.
But in the past few years, I realized that meeting new people actually isn’t that terrifying. What I discovered while in college is that less people actually initiated that awkward conversation. I often didn’t even get the weird question about my foot–most people didn’t look at me like I’m any different. And after that, I realized wow, meeting new people isn’t as scary as I thought. Even if people did ask me about my foot (which still happens very often), I would just shake it off after explaining to them my syndrome. At this point, I enjoy telling people about my syndrome because it’s an opportunity to educate them on a rare disease they’ve never heard of.
I think this is really important to keep in mind, and people will most likely start to realize it later on in life. Meeting new people is a great thing and you shouldn’t let your rare disease or difference get in your way of having those new experiences. People will respect you either way even if you have to rush through that little awkward chat, and if they don’t, cut them loose! That’s their loss.
I just think it’s so incredibly important to not let the fear of possibly ending up in an uncomfortable situation get in your way of experiencing new things and people. Life is too short to be fearful of little things like that. Overcoming that fear of meeting new people can make those experiences in life so much more enjoyable. I think the dumbest thing I ever did was let my disease control how I felt about life experiences. Don’t ever let that fear control you.