*CW: ableism, self-doubt, self-esteem issues, mental health, chronic pain.
Some days I’m funny and I write funny things on my blog. And some days I do the opposite of that, like right now.
Some days I feel like a failure. Some days I feel like a fraud. Some days I feel okay. Some days I feel really sick. Some days I walk with a cane. Some days I don’t. Some days I feel really strong and successful. And some days I feel like a failure. Oh right, I already said that. It’s really hard to reconcile the mixed feelings that I have about being a twenty-eight year old on long term disability unable to work. Most of those feelings that I just discussed are tied to me being on sick leave. It’s been a year now.
I grew up in a society that values work above pretty much everything else. Your worth is tied to your work. Your drive, determination, and discipline are related to your job. If you have a job and you get up and go to that job every day you are celebrated. If you grit your teeth and work through pain and sickness you are a trooper, a hero. If you can’t get out of bed to make it into the office you are a slacker. Health never comes first. Which is why, one year after leaving my job because of my illness, I still have days like today where I walk around with this black cloud over my head and I hear those voices whispering to me, “you aren’t good enough.”
Deep down I know my worth is not connected to my work. I know I am so much more than a 9 to 5 office job. But on days like today, I seem to forget that. If everything isn’t about my job then why is the first thing people ask me when they meet me: what do you do for a living? How am I even supposed to answer that anymore? I know as soon as I say “I am on sick leave” there will be judgments made, there will be “but you don’t look sicks” passed around the room. If I say that I work in administration I feel guilty, I feel like a liar. I haven’t worked there in over a year now. But I don’t want someone’s first thought about me to be that I’m lazy, that I don’t want to work. I want to work so bad. I would love to be able to get up every morning, jump in the shower, get ready and go to the office for 9 hours. I would love to feel productive and part of a team, instead of having to watch my fiance get up in the morning and go to his job while I stay home in bed doing nothing. It isn’t a good feeling.
Sometimes when I need to use my cane out in public I feel like a fraud. I feel like people are going to look at me and think “I saw her two days ago and she wasn’t using a cane…she’s a faker.” I had this feeling just this past Sunday when I went to a comic book convention for an hour with Matthew. I knew I was going to be on my feet for an hour so I used my cane. Later that evening I went somewhere that I knew I would be sitting down for, so I didn’t bring my cane. It made me feel anxious that someone would see me at both times during the day and pass a judgment about me.
I also worry about being in public WITHOUT my cane and seeing someone who knows I’m on sick leave. I worry they won’t see a visible sign that I am not well and pass a judgment about my health or my motivation level. I worry again about the terms “faker” and “lazy” being conjured up in their minds.
I spend a lot of time telling people not to listen to others when they make comments about your abilities or how healthy you look when you are sick. I tell people I believe them all the time and I know they aren’t faking it. I tell people that it’s okay to be on sick leave when you need to be on sick leave, that your body and your health come first. I know that these judgments and concerns stem from systemic ableism that is embedded in our society. I know how wrong it is to think that way or to assume that someone’s abilities are tied to their worth as a human being. But that doesn’t mean I don’t have days like today where I find myself questioning it when it comes to my own body. I have days when I slip up and take those comments to heart instead of reminding myself how problematic it is that people think that way. I feel like I need to be honest about that. Being an advocate starts with me. It starts with this body and this mind, it starts with me feeling comfortable in my own skin and cutting myself some slack. But sometimes it’s easier to advocate for the people in your community that you care about than it is to speak up for yourself, to give yourself a break.
Some days I write poems like this:
And some days I write blog posts like this one you are currently reading.
I wish that every day I could be the strong, proud Lisa from that poem. But I wouldn’t be honest with you if I told you I was. It’s always a challenge. With chronic illnesses that cause a roller coaster of physical symptoms every day, it’s easy for your mood and your self-esteem to follow the same course.
I know there are many of you out there who have gone through this too. Can you offer any words of advice? I feel as if those words would likely be the ones I provide to you when you’re in need of encouragement, but sometimes I just can’t offer them up to my reflection in the mirror. How do you get through these self-doubting days?