Five words I will never forget

I will talk some about how I felt after my diagnosis, and what someone said to me that made me see it all a lot clearer. This is about how I felt and it wasn’t good. Please note that I have seen a psychologist to get that all sorted out and I am not feeling like that anymore. This is just me pouring my heart out.

When I first got the diagnosis of Poretti Boltshauser Syndrome, I had a really rough time. I was absorbed within this black hole of self-pity, negativity and just feeling victimized. I had this syndrome which was so incredibly rare. I felt misunderstood and like a failure in some way. Like I just lost the genetic lottery big time. I had to really learn how to adjust my daily schedule so I could feel better, knowing the fatigue would never really go away. I had to figure out a way that works, and I struggled with this.

Especially in the beginning of when I had the diagnosis, this was something I struggled with immensely. I would basically live on the couch in my bedroom, watching tv all day. I felt so useless, even after graduating high school. It felt like it didn’t matter. I was in a dark place and pushed people away. I was at the same time seeking validation in other people, rather than myself, thinking that would make me feel better. Well, spoiler alert, it did not make me feel better.

I failed to see past my syndrome and figured others did too. That they first saw a disabled person, instead of me behind that. It really felt that way. I struggled to see positivity. When I started my further education, I enrolled in a Coping training. I didn’t want to do this at first, because everyone copes in their own rhythm and style, right? Well, I had not known beforehand that it would be life-changing for me.

Not that I exactly remember what was going on and why she said that, but the teacher looked at me at one point. It must have been the millionth negativity I said about myself and my syndrome. She told me: “You ARE NOT your disability.” I am never actually speechless, but this time I was. Utterly speechless. She said: “You are your own person, with your own qualities. Your disability is a part of you, but it does not define you.”

It was like a switch was flipped in my head. Like puzzle pieces falling into one another. I went from quiet and observing to being my outgoing personality again. I went from complaining about everything to being a cheerful person and started making friends. Some of these friends I still see once every few weeks. I started to realize that I had many talents, that I could use for the better. I went from feeling misunderstood, to making myself understood. If I told people how I felt, they would understand. The people I met really liked me being outgoing and funny. It was more validation than I had ever had. I started to get more self-esteem. I woke up feeling good again, instead of feeling tired.

It’s like after these words were spoken, I could finally start working on myself. I wanted to see a psychologist to get it all sorted out. I wanted to feel good again, because it did matter. I mattered.

These five words is what I would like to tell your children. It is so easy to drown in all the diagnosis and what is written about you on paper. But you are a person WITH a disability, but it will not define who you are. You can do many things and I just want others to realize that too. It’s so easy to be focused on the negative, when they tell you these negative things every doctors appointment, but really focus on the good things too.

Thank you for reading and have a good day.

Alissa