“I hope you know you’re capable and brave and significant. Even when it feels like you’re not.”
It’s hard to not feel worthless when you’re sick all the time. Even if I’m not actually sick, I don’t feel like other peiople. Because I can’t just get up and everything be okay. Something is always “wrong” – not always huge and scary and needing medical attention, but I wake up and already I am thinking, worrying, planning, preparing.
Why, I hear you ask? What are you thinking about? Why are you worried? What are you planning? What are you preparing?
Thinking about how rough that night of sleep was.
Thinking about how will I get through the day on that little sleep.
Worrying about driving to work.
Worrying about my bag leaking.
Worrying about being in pain.
Planning when to take my medications.
Planning when to eat.
Planning on when to go to empty my bag.
Preparing to explain myself; about why I’m abit late, why I need the loo so much, why I need to go early again for another hospital appointment.
These are just a few of the regular things I would think when I would get up; it’s not changed much throughout the years of having Crohn’s Disease. Unless I am consciously busy, I always consciously think and feel this way. This all started when I was diagnosed. My thoughts moved from questioning the unknown-ness of my disease to now being about the limitations I see because of my illness. They are still there despite having an ileostomy; which does help me live my life, albeit differently, I am still trying to not let what I have take over my life or how I see myself.
So I get told I am capable. And that I am brave. I suppose having surgeries such as I have had shows I am both those things; but it’s not exactly easy to choose to have your colon removed – I remember thinking I wasn’t the first or last person to get given this choice, why was everyone making my bravery in choosing it such a big deal? – but we needed to take action and it seemed it was going to have to be instigated by me. I took the bull by the horns and told them to just get rid of it. It wasn’t worth arguing or discussing further; give me the TPN and then do the bloody surgery!
As much as I don’t see myself as being significant, I had to make my significance known. I had to fight for my patient rights, for my decisions to be heard, for my life.
It seems it always come to ahead at a breaking point. Or a turning point.
Maybe people made such a big deal of it because they needed me to get through it. So telling me I’m capable of this, that I’m brave for all that I’ve endured and put up with, is to prove just that; that when I feel incapable, weak and insignificant, I’ve come too far to let that be what defines my journey and myself.
Time to get back to fighting the good fight.