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Pompe disease is a muscle deterioration disease. In other words, a disease that gets worse as time progress. I’ve never met in person another Pompe patient, but thankfully for social media, I have met virtually many wonderful people that also have Pompe.

I have noticed that many of them were not as worse off as me, meaning some of them can still walk and don’t need 24-hour ventilation. That doesn’t bother me but at some point, it did make me think why. Why am I weaker? What did I do wrong? When you start comparing your illness to others that’s the beginning of insecurity and later depression. And yes, I was insecure for a long time. 

Remember decades ago when everything was so noticeable, like teeth braces that went around the head and hearing aids and bifocal glasses. Now everything is so discreet. Braces can be invisible, hearing aids are little chip devices that are barely noticeable, and glasses are smaller and more advanced.

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I personally feel like medical equipment is a bit behind but is definitely getting better. And I know that may seem silly to say when medical technology has advanced so much, but I just keep comparing medical equipment to things like robots and cars and communication devices. I keep waiting for the day when my face mask to my breathing machine is just a tiny nose clip that sits around my nose with no tube and the machine I can fit in my purse. I’m very hopeful for that, especially when I see people with oxygen tanks that they can fit into their backpacks.

My point is our medical equipment definitely plays a part in our insecurities, but there’s nothing we can do about that except learn how to deal with it. 

Read more about therapies for Pompe disease

So how do I deal with it? As someone who loves makeup but has to wear a ventilator mask on her face and who loves stilettos, but her feet are disfigured, and who definitely is big on fashion but has a disabled body, how do I keep confident and secure? I keep a healthy mindset. I know who I am as a person and what makes me happy. I’m a very simple person. All I need is music, movies, and writing. I also need isolation. 

As weird as it may sound, I have to spend time completely alone just for a few hours for my sanity. People carry a great amount of energy and even though humans depend on each other, I am just one who feels the most comfortable being myself. 

However, I do understand the importance of being social and being around people. Especially people who are like me, living with disabilities and rare diseases. What I also learned about having a healthy mind is having healthy relationships. Not speaking about romantic relationships but just having a healthy relationship with everyone you’re close to. Your friends and family play a big part in your life.

This came more clear to me when I became more self-aware, seeing that certain friends and family were not just sympathetic but also judgmental and felt like I wasn’t worth much. I know that sounds terrible but the ableist mindset is very common. I had to learn to be more open to others about who I am and I stayed away from whoever I wasn’t comfortable around. 

The world is definitely stressful and I can lose my mind if I don’t have self-love and happiness. So, I have to do things that make me happy like getting dressed up and going out somewhere simple like a museum or to the movies. I’ve spent so many years being stuck in the house or hospital because of my illness. Going out, especially on a sunny day, is good for me.