I haven't really talked about it as much as I've planned to, but I've been dealing with several long-term health issues for a long time now. On the outside I look like a perfectly healthy 36 year old, but on the inside it's a whole different story. I was diagnosed with Clinical Depression when I was just in 4th grade, then Asthma sometime in high school. In 2008 I was diagnosed with Lymphangioleiomyomatosis (LAM), a rare lung disorder that almost killed me before it was diagnosed. I was diagnosed with Generalized Anxiety Disorder about 5 years ago (which has been in no way helped by the Covid-19 pandemic) and I've been dealing with Migraines for as long as I can remember. Add a newly found allergy to pollen that lead to me having horrible headaches and dizzy spells where I nearly blacked out and I'm just an overall mess of a human being. But no one who looks at me can see any of that.
I've always taken pride in a job well done, no matter what kind of job it was. Even when I was recovering from almost dying I wanted to work. As a matter of fact, as soon as I stopped looking like one of the living dead I started putting in applications. To my way of thinking, if I can be working I should be working. I can't express the amount of guilt and shame I felt when my anxiety forced me to quit a job in the public and confine myself to my house for over a year. I was incapable of even walking to my mailbox without having a panic attack, and in between attacks I constantly berated myself for being "weak" and not "a productive member of society." (This did nothing to help with the anxiety by the way) I finally was able to get back into the workforce right before the pandemic and was fortunate that the company didn't let me go when my training was interrupted by the lockdown. It's a part-time job, 20 hrs/ week, but fairly important to the company (We were classified as "essential personnel" through the lockdown) I make barely enough to get by, but I'm working.
The problem is, no matter how much I may pretend otherwise, I still have several chronic illnesses and they are going to have an impact on my ability to work. Sometimes I can force myself to work around my issues; a pair of dark sunglasses can sometimes mitigate the effects of a Migraine, an inhaler can make it easier to breathe when the air quality is bad, things like that. However, there are still times where no matter what I do I have to call off work. I hate calling off of work. But if I'm curled up in a ball in the dark wanting to cut my head off even after taking medicine and putting on sunglasses because of a migraine, I can't drive to work let alone do my job (which requires a lot of concentration and fine detail discernment) and I have to call off. If I'm having dizzy spells where I'm partially blacking out, I shouldn't be behind the wheel of a car. If my butt is all but glued to the toilet because of intestinal issues or making offerings to the porcelain god, I shouldn't be working around food. So I call off.
Every job you will ever work will have a limit on how often you can call off without there being repercussions. That number will vary based on where you work, what your position is, and whether you're full or part-time. When you've reached that number, something will happen and no matter how well you do your job there is always the risk that the "something" will be termination of your employment. When you are living quite literally paycheck-to-paycheck this is a terrifying prospect. You dread having your boss call you into their office for a talk because you never know whether you'll be going back to work afterward or be escorted out of the building because you no longer work there.
There are certain protections in place for people with disabilities, things like the Family and Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) for example. But not everyone qualifies for those protections. You have to work a certain number of hours per year to qualify for FMLA, if you work part-time you don't meet that requirement. For the ADA your request has to fall under what is called "reasonable accommodation" and when your issues are multiple and unpredictable there really isn't a "reasonable" way to accommodate them. What is someone, like myself, in this situation supposed to do?
How are those of us with chronic illnesses supposed to provide for ourselves and our families when the system we have to work within is not designed for us? What are we supposed to do when we are too sick to work, but too healthy to be disabled? How long can I hold up against the anxiety of never knowing whether this is the day my illness will get me fired? How much worse will my depression get if I'm forced not to work?
I honestly love my job. I love being part of a team and making a difference in the company I work for. I hate the limitations my body is placing on me, and they will only get worse over time. I don't want to be judged poorly for how "healthy" I look on the outside while taking care of how ill I actually am on the inside. It's just too much.
Everyone wants you to "do your best", but judge that by what they consider to be your best. At a certain point, you push your body beyond what is "best" for it and at that point, it is no longer "your best" but doesn't live up to the standard of "best" that others are holding you to. So you push further. "See, you had it in you all along," they praise you as you feel your body fall apart a little more. They won't understand when you can't do something even easier the next day. They can't understand that your body used up its ability to "do" today doing what it did yesterday. You don't want to be a burden so you push yourself again, all the while feeling the toll it's taking your body, your mind. They won't understand why you just want to stay home and sleep on the weekend, why the little things around the house aren't getting done anymore, why you're canceling plans at the last minute.
The strain of chronic illness is so much more than just what it puts your body through. It's the invisible fight every day against the difference between your limitations and the expectations placed on you. And sometimes, the biggest expectations are the ones you place on yourself.
I don't have any answers. I'm not even sure I know the right questions to ask.
