“I get up and pace the room, as if I can leave my guilt behind me. But it tracks me as I walk, an ugly shadow made by myself.”
-Rosamund Lupton
It’s mood altering. It takes away my joy It’s a nuisance. It consumes me.
We all feel it at some point in our life and all for different reasons.
For me, it has been the hardest thing about living with a chronic & invisible illness.
I feel guilt because people have to take time off work to get me to my appointments.
I feel guilt because the dishes stack up in the sink and the floors don’t get cleaned.
I feel guilt because dinner doesn’t always get made and I can’t enjoy a meal with friends without GI issues.
I feel guilt because I have to stop and rest and can’t always make it to gatherings.
I feel guilt because I don’t have a job and can’t contribute monetarily.
I feel guilt because my medical bills are outrageous as well as the individual PPO plan that I have to have so I can be seen out of state.
The list goes on and on so i’m not going to sit here and bore you with all the ways my brain makes me feel guilt.
However, I do want you to know this…
I started this whole new “online” chapter of my life based upon my feelings of guilt.
It would literally consume me.
Everyday.
EVERY DAMN HOUR OF EVERY DAMN DAY.
Not because the people around me made me feel that way. No, the people who surround me support me 100% and remind me that if the dishes don’t get done the only thing that will happen is they may get a little stinky and that even though I don’t contribute monetarily, there are a million other ways I do.
But none of that stops the little voice in my head that goes off every time I see a new doctor who has a year long waiting list.
While I am so grateful that I somehow ended up in good hands, guilt takes over me and all I can think about is the fact that there is somebody else out there who needs to see this doctor more than me and being here is taking time away from somebody else who needs it.
Whether they can’t get there physically, financially or for whatever other reason, it’s all I can think about.
My mind wanders to the fact that i’m thankful we can afford good healthcare, that I have had mostly good experiences with all the doctors i’ve seen, that I was diagnosed fairly early in life when others go decades not knowing what the hell is going on with their body and that I have a supportive family and some great friends.
Why did I get so lucky and why can’t everybody else have these things too?
I hate the thought that there are people out there who have no family support.
I hate the fact that there are people out there who don’t have access to good healthcare.
I hate the fact that there are people in their forties with EDS who are very sick and don’t know what is wrong with them.
I hate the thought that there are doctors and medical professionals out there who belittle and are ugly to their patients.
How can I change this and how can I make a difference?
I thought long and hard about this question.
LONG.AND.HARD.
There are so many things I want to see implemented in the chronic & invisible illness world. (Things I will share with you at another time.)
Then it hit me. Share your story, Kirsten. Share it. Open up about your life. Talk about the things that have helped you and the things that haven't.
Talk about the good things.
Talk about the things that suck.
Share the knowledge you have obtained from some of the doctors you have been lucky enough to see.
Help those who need help, be helped through your life and your words.
And maybe someday you will be lucky enough to help implement some of the things you wish were available to the chronic & invisible illness community.
I don’t think the guilt will ever fully go away. I hold a lot of empathy for humans going through things. A lot. But I have learned to channel the guilt I feel into something positive. To be constructive with it. To give it a purpose.
We all have a purpose. It’s okay if you haven’t found yours yet. You will. It took me 29 years.
Remember, "Count your Rainbows, not your Thunderstorms!"
xoxo Kirsten 💕