By Emily –
The physical pain of migraine and fibromyalgia can be excruciating, but in my experience, nothing compares to the emotional toll of feeling worthless due to the inability to work as a result of invisible illness.
When my ability to work was ripped out from under me it felt like the entirety of my self worth had diminished in an instant. Try to imagine if everything you have spent your life working toward, and all the accomplishments you collected along the way, suddenly meant nothing at all. That is what not being able to work felt like–like I had lost everything that had ever defined me. I had lost myself.
I had always defined myself by my accomplishments. Doesn’t everybody? Growing up it was my intelligence and academic achievements, and soon enough it was my work.
The society we live in teaches us that happiness waits at the top of the socioeconomic ladder. We may get a little older, a little wiser, and realize that true happiness isn’t actually found there, but how many of us actually take that to heart? How many of us can say we find our self worth in a place completely disconnected from our work, academic achievement, or any other measurable accomplishment? Not many, I’d bet.
This became very obvious to me when my only recent accomplishments had consisted of getting out of bed, keeping my dinner down, and staying upright long enough to take a shower–none of which the outside world would deem worthy of praise.
Most days, the simple tasks we take for granted were the most difficult challenges I had ever needed to complete. But none of that mattered, because the only way I could see to define myself in that state was useless.
To add insult to injury, it seemed like everyone else agreed. I got a lot of reactions like these from my loved ones:
“Are you sure you can’t work at all, not even part time?”
“Will you be able to go back to work soon?”
“When do you think you will be ready to go back to work?”
“If you aren’t working how will you be able to keep up with your bills?”
“You know, sometimes we all just need to push through.”
I can feel the tears welling up now reliving these moments; each one was like a punch in the gut. What do you say when it feels like nobody is listening to you? When the people who are supposed to love you unconditionally and lift you up when you are down have also seemingly reduced your self worth to your ability to work and make money?
I know that those people love me. I know that they don’t actually feel that way about me. I know that they did not mean to hurt me with the things that they said. I know that they said those things out of love and concern, but it certainly did not feel that way in the moment.
The comments that really sting are just the tip of the iceberg. Even just running into an old acquaintance at my local Wawa can be an unwelcome reminder of how much work is woven into our identities. Those conversations usually go something like this:
“Hey! How are you?”
“I’m doing okay, how are you?”
“I’m good! What have you been up to these days?”
“Oh, nothing really.”
“Oh, well where are you working?”
“I’m not, I had to stop working two years ago when I got sick.”
Insert sound of a vehicle screeching to a halt. There is inevitably an awkward pause to follow. The other party almost never knows what to say. This is not the small talk they signed up for! What else would we talk about if not work?
From there it can go one of a few ways.
Most likely, I will simply change the subject back to them, end the conversation, and we will go our separate ways.
Sometimes the other party will feign interested, ask me some basic questions, and then sign off with something like, “I hope you get better soon.”
Other times, at the mention of migraines or fibromyalgia, I will be found on the receiving end of a deluge of miracle cures that their sister’s friend’s mother swears by… but that’s a story for another blog.
It’s not just in the case these of two extremes where I’m left feeling “less than” because I’m not working; it’s in almost every encounter I have. How many times have you met someone new and they didn’t ask you what you did for a living? How often do holiday conversations revolve around how everyone is doing at work or school? I have quietly excused myself countless times only to go cry in the bathroom because I feel I have nothing worthwhile to add to the conversation.
It’s not easy. Nobody knows how to navigate these waters. Nobody knows how hurtful a statement like, “Oh I wish I could stay in bed and binge Netflix shows instead of going to work everyday” can be to someone who doesn’t have the option.
Finding self worth disconnected from academic or career based achievement has been the single most difficult struggle I have had to face to date. I am still struggling.
Even now that my illnesses are managed to a point that I am functional and ready to go back to work, I am not completely there on the self worth front. I am on my way but there is still work to be done. I have not completely figured this one out yet. The answer didn’t lie in getting to this point of functionality and it won’t be found in another job, like I thought it would, because those are still external measurable accomplishments.
I am beyond excited for when I get a new job and I am so grateful that I have been able to manage my illness well enough to allow me to do that. However, I will be mindful to remember that my job does not define me. True self worth will come from within. It won’t need anybody else’s stamp of approval. It comes from loving yourself for the person that you are. For the joy you bring to others, or the love you give freely, or the kindness you exude. These are the things that define us, and these are the things we should feel proudest of. These are the things that illness will never be able to take from us.