When is it ok to say you can't? The socially correct time is Never.
During this divorce process I have learned so many horrible things. I asked my -what do you call your husband prior to divorce? What was it he used to love about me? He said he used to love my "determination" how someone telling me I couldn't do something only made me more determined to. It's true really. That was how I approached everything. It's why I'm a feminist, why I chopped all my hair off in high school, why I went into drafting and engineering, why I rode motorcycles, got tattoos. But It's also why I'm still alive. Why I blog and run a support group, why I fight for awareness and now disability. The first half of that was glamorous, enticing. The second half, not so much.
If you really see it though you see that the second half is so much more than the shallow first half. All those things did nothing but harm. In the second half I gained perspective, not what it's like to get what you want, but what it's like to be real, to fail. I love so much deeper now, I feel so much more compassion and I know there is such thing as regret. It took a while for me to see it but I'm a better human being even if I'm failing economically. I never lost that determination, I just funneled it into something else, something less like ambition and more like survival. He never cared about my determination in this world. He was always waiting for me to be her again, he never made room for me.
People misunderstand me when I say that I can't work. Can't is kind of inaccurate. I can do things, I'm not incapacitated just unreliable. Entirely unreliable. I can do things, but they have a price now they didn't have before. I say I can't work even a part-time job. This is true. But the why is the most important part. it's not that I don't have the skills because I do, actually I'm pretty good at a few things. I'm not efficient though. I'm slow because pain makes me slow. It makes every task 100 times harder. Sitting hurts, standing hurts, Some days I can sit for a decent time, other days even minutes will slay me. Some days stairs are just annoying, other days stairs are impossible. Sure I can lift something today, but if I do I probably won't be able to tomorrow or the next day, I may not be able to come in at all. I don't sleep right, it's not willpower it's a disorder. That makes me incredibly fatigued. I fall asleep doing small tasks and can't focus on anything and if I'm really tired then a computer monitor will give me a migraine, focusing on anything will, even reading. I love reading. Those are just the obvious workplace issues. The ones you wouldn't even think about are ones like smells. I am so intolerant of even the most mild scents. That alone makes almost all workplaces impossible. Could you even imagine, your deodorants, lotions, perfumes, cleaning products and even plastics all make my life hell. Instant overwhelming fatigue, I often turn blotchy with bloodshot eyes. That doesn't look good if you have to see clients. They are constantly asking me if I'm ok because I look like I'm having an allergic reaction, which I am. Sounds can set my ears ringing and my brain buzzing, they can even cause me stomach aches and nausea. Sounds people! I'm allergic to fluorescent lights and I cannot have a direct light on me because it causes my autonomic system to dysfunction. I get sweaty and shaky, I get heat hives and I get dizzy. If the air conditioner hits me I get shaky from the cold, my raynauds acts up and my fingers and toes turn blue, it's physically excruciating to type with a raynauds flare, also weirdly the cold causes me to yawn excessively. we haven't even started in on irritable bladder or bowl. Tell me people; if your neighbor was always running for the toilet would that bother you? The double down side is dehydration, I am always dehydrated so I must drink water but then I have to pee constantly. Add a coffee to the mix and wow, and really who doesn't need a little help during the day, coffee is inevitable. If I'm having a particularly bad day I will likely be moody because I am in a ton of pain and extremely tired, I may need to lie down and I might have trouble speaking. Tell me at this point how many concession is a job likely to make? No air, no lights, no smells, no sounds, a bed, breaks every 15 minutes, heat packs, ice packs, ergonomic everything... You get the idea yet? I'm an office mates worst nightmare. Oh I forgot about doctors appointments! I have 3 days a week with two hour periods of treatments, you think an employer would let me do that? that's just maintenance. There are so many more during a flare. Including the possibility of emergency trips.
So work from home you say! That's ok, but is it ok if I don't meet deadlines? If it takes me two weeks to do something it takes "normal" people hours? Can I give you assignments at 2 A.M. Oh and don't bother calling before noon because I won't be able to communicate properly. Will you understand if I have a flare at home and can't work? Just because I'm at home doesn't mean I am any more productive than I was at work. I still get raynauds and can't type. I still have insomnia and can't sleep. I still have cognitive issues some days where I could read something a dozen times and not understand it. I still have doctors appointments and therapies. My workstation is the same as yours, I still have to get up all the time. I still get so tired that all I can do is lay down. Sometimes my ribs hurt so bad I couldn't sit anywhere and I definitely can't stand for long. Will you understand that? Are you ok with that?
No day is the same. One day I may seriously impress you with how much I accomplish, I'm awesome. The next I can't work even a hour, It goes like this. I won't know until it happens. It can change from moment to moment. I may feel fine one moment and the next need to lie down. This is life. Every. Day. Every. Minute. Will you be patient with me? Will you accommodate me? Will you tolerate my mistakes? Can you even afford to?
Most people don't. And honestly I can't blame them. I've tried, I've tried, I've tried. Have you ever let someone down? Do you know how hard it is to know that you are always letting someone down? Working and the pressure associated with it made me sick all by itself. I don't tolerate stress and who wouldn't be stressed when they know they should be doing something and they can't. Every time I had to call off I would have a freaking melt-down. Every time I was late because I couldn't drive just yet would make me upset and scared. Everyday you are waiting for them to tell you "it's just business" you are always waiting for the ax to drop.
My anxiety maxed when I was trying to work, I was sick more often, I had flares constantly and I had nothing left. What kind of life is that? Every day was hell. I'd wake up everyday saying is this what my life is gonna be? Can I do this? I just wanted to die, it's all I could think about. I hated who I was when I was working, I was depressed and off the charts with pain and fatigue, it made me angry, irritable and bitter. Nothing good left. And the thing is I knew I stood no chance of advancement, I'd never get a raise or a promotion, my co-workers wanted me gone. They were working their butts off and I was always asking for help. No one wants that, everyone has their own life and their own problems and making up for mine just wasn't an option. My self-esteem could not be lower. I am a drain on resources and at least on disability I'd be out of everyone's way. Including my own. Maybe I could stop hating myself for not measuring up. Maybe I could breathe and try to heal.
So is it ok yet for me to say I can't?
I can't work. I know I can't. Not in any sustainable way. Oh sure I could do the odd job, I might even do it well, but you are taking the risk. I have often had to tell a client months into a job that I can't finish it. I could not keep up or a flare had me down for weeks and nothing was getting done. do you think they'd hire me again? Or refer me? My life is full of inconsistency. The only thing I control is how I deal with it. Working takes even that away because I have no energy left to deal.
I know that it's hard to see just how disabled I am, I know. I haven't given up, I am doing good things. I am helping others. Isn't that what a job is? Or is it only about the money? Can you understand I need this, I'm not lazy, I'm not asking for easy. If you think my life is easy you couldn't be more wrong. Chronic illness is by far the hardest job I've ever had, I never get a vacation. Never.
Working gives us purpose, it makes us feel good about ourselves. We should not take for granted our ability to do so. You have no idea how badly I want normal. I'll take it, all of it, the terrible boss and the long hours, I'll trade it all in just to be healthy again. I wish I could feel exhausted and know it was because I worked my ass off. I wish I could go to bed exhausted and know tomorrow I will have energy to waste.
My (whatever) says it was too hard for him to see me like this, to know there was nothing he could do about it. It made him depressed. There was so much he could do for me. Believe me, give me the chance to redefine my purpose and believe that I can and will. help me be determined without feeling the guilt of not being able to succeed in "normal" ways. He chose not to help me, because it did not fit his description of success. It must be so hard to see past yourself if you've never experienced such loss, I don't know if I would have been able to see it had it not happened to me. I'd like to think I would be by his side if it happened to him, that through him I would see the truth, but perspective is strange. We only see what we want to.
So if I say I can't it doesn't mean I've given up, it just means I know my limitations. I can't if I want to survive. I mean that. Someday maybe I'll be able to say I can again, I have NOT given up. I do feel I have purpose, it's here helping others get through their day.