Recently, I was afraid someone was going to prevent me from participating in something because of my CFS. In the end, the decision was left up to me, but it pushed all of my buttons.
It was like I imploded. Something inside collapsed, and all I could feel was sad, discouraged, listless.
Sometimes I forget that I even have CFS. I’m so used to it, that it no longer really factors into my daily life. It’s just a part of it, like having two legs or blue eyes. I know what I can, and can’t do. Sometimes I need naps, sometimes I’m in a lot of pain. But that’s just part of “being Sarah”.
I forget that to (some) others, I have this mysterious chronic illness. I have a “disability.” And they express their concerns over whether it’s very sensible for me to do A or B, because of this disability. I forget that, because they know nothing else about me, the only thing they can see is my limitations.
But they don’t know me, or what I’ve done, or what I’m capable of. I know those things, but when I’m presented with this other point of view, it’s like I forget all of that.
Suddenly my thoughts start running like this:
“Oh yeah, I am sick. Maybe they’re right. Maybe I can’t handle this situation. I probably shouldn’t even be trying to do X. Who do I think I am anyways? I mean, I’m just the sick girl. I should probably just go home and do some finger painting. It’s not like I’m ever going to amount to anything.”
And then I start to give up hope. I implode. I feel like all they, or anyone can see, is that I’m the sick girl.
It was my self definition for so long. “Hi, I’m Sarah and I have CFS.” You spend long enough traipsing around from hospital to hospital, doctor to doctor, soon it’s all you see because it’s all you ever talk about.
Go to the doctor’s, talk about the CFS.
Go to school, figure out how to deal with the CFS with your teachers.
Go home, figure out how to do homework while dealing with the CFS.
On the weekends, explain to your friends that you can’t go out with them because of the CFS.
Rinse and repeat. For 5 years.
I completely forgot who I was underneath all of that. I lost myself completely.
Then I found art
I still knew that I loved art. Art still made sense. So I decided to pursue it. Slowly, I regained my sense of self as a human being and not a disease. I haven’t looked back since.
It’s been over 3 years since I’ve had to explain my illness to someone else, since I’ve had to negotiate around the CFS. Sure, I talk about it all the time on here, and in my bio – I’m certainly open about it. But it no longer has power over me. I’m the one in control. I’m the one who says, “Yes, I can do this.”
Being in a situation where I wasn’t in control, where I was waiting for someone else’s permission – it threw me off. It made all of those feelings of inadequacy come rushing back. To the other person, it was just a decision.
For me, it was like waiting for a death sentence. It was like waiting for permission to be myself again, and not just “that girl with the weird chronic fatigue illness thingy.”
I so desperately did not want to be her again. I didn’t want to be defined by that. I wanted to be seen clearly, for all of the awesome that I bring to the table, and not the one thing that I have no control over.
Fortunately for me, I have people around to remind me of who I am, but who also understand how hard it is for me when I forget. How discouraged and lost I feel. How afraid I am to go back to that place where I’m a shadow of myself.
But I’ve got so much more power now.
Back then, I was pretty helpless. I didn’t have a lot of control over how my life was run.
Things are different now. I’m the one in control, and no one can take that away from me. Others may decide to define me by what I am and am not physically capable of, but I don’t have to do the same thing. I have a choice. I can choose to let that define me, or I can choose to remember that I have so many other skills, so many other wonderful things to bring to the table.
I can choose to see myself as a burden, or see myself as an asset. I never have to feel like that girl again.
I’ve found myself.