*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?
6 Comments on This is a blog post full of my feels about not being able to work and other uncool things
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Ardra
August 29, 2017 at 9:07 pm (6 years ago)I went through all this exactly and was the same age as you and my wedding was happening at the same time and it was like I was getting married and becoming a 1950’s housewife. Major identity crisis. There are so many layers to this issue that it takes a loooooong time to figure out, but you will. Cause you’re creative and introspective. The people who can tie their identities to their work don’t have to do any work to figure out who they are beyond that but you do and that’s an awesome thing. Who am I without x? Who knows. But you get to decide and to cultivate that.
As for the judgey bitches, fuck that shit. Everyone judges everything and if it wasn’t because of your illness it would be for something else and anyway, it’s 2017 – the age of inclusion and diversity. If someone dares to slam you they will only be perceived as ignorant and, uhm, not woke. Am I using that correctly?
I don’t know about your old job, but writer, blogger, comedian – all those things sound way cooler and more interesting than administrator, so tell me about that.
Or move to France where they know it’s boring and basic AF to ask how someone brings home the baguette.
damselinadress
August 29, 2017 at 9:40 pm (6 years ago)Thank you for this comment. <3
You said exactly what I needed to hear. I even read it out loud to Matt 😛
FH
August 30, 2017 at 3:48 pm (6 years ago)I needed to read this today too. Thank you <3
Emily C
August 31, 2017 at 8:42 am (6 years ago)You’re one of the most fabulous people I know and it hurts my heart that you have to go through all of this all the time. I agree whole heartedly with the first comment. Fuck those judgey bitches.
Obviously I don’t know what it’s like to be sick. But after Target I was unemployed for 8 months and sunk into a depression because all my friends had jobs and I couldn’t find one. I felt worthless and useless and judged for being lazy when really I wanted so badly to find something but my depression took all my motivation.
What really helped me through it was my friends and finding things to do that made me feel good and useful. I started a book club, I took over organizing poetry, I made routine dates with friends to hang out. I made sure I didn’t put myself in situations where I was easily triggered and when I felt myself sinking again I told someone.
This blog is so great and imo does all those things. It gives you an outlet but also it has purpose. People read not only this but also your poetry and they connect with you and know they aren’t alone. You help people. That is so important.
I know it is so hard to stop caring what other people think but if you can you will be so free. It is no one else’s business what you are doing when/where/with what cane. You know what you need and when you need it. Everyone else can eat a dick.
Christie
October 16, 2017 at 11:30 am (6 years ago)I needed this, Lisa. Very timely for what’s going on with me right now. Thank you! I get why you feel the way that you do and it’s your prerogative to feel that way, but hopefully you know that sharing your stories helps other people. Funny/not funny is that I sometimes read your stories and listen to Sickboy and think to myself that I’m not sick enough to stay home from work so that I can heal from a lupus flare up. I’m not Lupus-y enough! But I’ve got my stack of Brene Brown books and I’m working on that. Just know that what you do is appreciated.
Clara
February 10, 2018 at 7:12 am (6 years ago)Lisa, Came across your blog thanks to my fabulous friend and fellow musketeer/group leader ScorpioJ sharing your link to this article over on the Chronic Fatigue Syndrome Support Group on MDJunction- totally identify with You as was in my early twenties when chronic pain was so severe could no longer work plus had to go on disability benefits! Honestly think the twenties was the toughest to deal with other people’s thoughts plus feelings as well as feeling guilty or a fraud yourself, though when entered my thirties became far more philosophical plus at peace with not being able to work plus Being Enough as am right here right now, then when entered my forties(now am 44 & 7 months old 😉 plus a big kid) which still am in nearly my mid 40’s – feel even more peace plus give myself more of a break, though sure there are tough times when hurtful words of others hurts or when you beat your own self up as no matter how brave a warrior you are plus no matter how zen like you can become- you are still human so as a human not a robot(albeit a rusty one when it rains ;-)) you will always have those tough days yet methinks as you get more peace within those days are fewer!! That is my take on it, anyhow. Your poetry is deeply beautiful Lisa- have you written a poetry book as if you have would love to purchase it!!
Thanks to my Canadian friend found your awesome blog and your awesome poetry- made me very happy indeed! Warmest wishes from a fellow sisu resilient chronic pain warrior, namaste Clarita (British lady with several chronic pain condtions- moderate severe to severely affected- fluctuate between two- and group leader of 4 support groups on MDJunction) 🙂 dolphin smiles across the miles to You Lisa:-)