I know that many times when I share my confession (yes it feels like a confession to me) of having a chronic disease that I was born with, with a stranger- I find them to be shocked and almost devastated. Their face draws to sorrow and then they basically look at me like a wounded bird. That’s OK. I don’t plan on seeing that person again so I don’t need to divulge much more than that.
Now when I tell a new friend, who has the potential to become a great friend I cringe when they say, “Oh my goodness, how do you stay so positive? I could never deal with that”, “I’m so sorry for you, how do you cope?” or “When did you get it?”. They are all innocent reactions and I understand that but as I venture down the friendship path with them and they learn about my story, I expect a different reaction.
Once I have educated my new friend and I feel good about their understanding, I am very happy to share the good, the bad, and the really ugly but I never want them to feel sorry for me from that point forward!
Why do I feel this way? Because it is uncomfortable, it makes me feel broken and inadequate.
I know you are thinking, “But we do feel sorry for you, its such a crappy disease and you did nothing wrong but be born with it, It’s not fair”
You are right that is it not fair but life is not fair for anyone so we all share that in common. Yes, my struggles are substantial and seemingly insurmountable at times but IT IS WHAT IT IS. What good does it do me or you for feeling sorry for myself/for me? It does no good.
I was raised to be normal, to try everything everyone else did, go to school, graduate high school, go to university, graduate university, work, get married, besides not having children, I followed the societal norms pushed upon all of us. What made that trajectory difficult is that those societal norms were supposed to be out of my realm. I have a disease that continues to kill teens and children. It is a mountain that seems impossible to climb. Society told me – “No, you will not go to school, you will not live to see graduation, you will never get married and you will never be a mom!” As you all know, that was when I put up my middle finger and said- “Watch me!”
Its those norms that we grow up with that make people feel sorry for me. They silently know that I will not get to follow the same path as most. I did not become a mom, but truth be told, I didn’t want to. I was too sick. I couldn’t imagine bringing a child into this world- without me there to protect and guide that little being. Its selfish of me to choose that. Not to mention leaving my now ex without a mother for his child. In the scheme of things, I have lived a life that many wish they could- even with the disease. I have achieved many things that will leave a legacy in my name, I have effected change for many CF’ers to come, I have inspired dozens of people to live their best selves, physically and emotionally, I share my life with an amazing fur girl and that is beyond rewarding for me. I am pretty darn happy even though I am heading down a dark and scary tunnel with my end stage CF. Again- Do not feel sorry for me. IT IS WHAT IT IS.
As I look back on my life and think if there was anything I’d do differently, I can honestly say not really. Maybe I should have laid off the excessive partying during my 1st year of University- LOL but come on- I HAD A BLAST!
Despite CF I believe myself to be a kind, smart, giving, empathetic, generous, funny, cute human being. I do not feel sorry for myself so please do not feel sorry for me.