Welcome back to the blog!
Disability and (chronic)illness can be visible and invisible. Disability and (chronic) illness can be stable and fluid. More often, it is less visible, and more fluid. At least, this is true for me. In today’s blog, I hope to shed light on the side of (me) being disabled that you don’t often see. Keep these points in mind before reading: this is not a full list, but only some that I can (currently) remember and are important. I’m mostly sharing my experiences and my thoughts. What’s being shared in this blog may (or may not) resemble your experiences, too (especially if you’re also disabled), or the experience of someone you know/somewhere you’ve read. Nevertheless, the intention of writing this piece, is hoping to educate the public, especially the able-bodied people, to be less judgemental, and to show more empathy and kindness toward disabled people. And, if you’re disabled, or if you can relate, this will hopefully make you feel less alone. So let’s begin:
I live with a disability everyday, but I don’t talk about it everyday:
I discovered that, the longer I’ve been living with my disability and chronic illness, the lesser I talk about it. This is not because my disability/illness is getting better. But, I became better at living with it. Besides, when I talked about my disability/illness “more” in the past, I actually had less frequent flare ups/symptoms/difficulties. But, if I talk about it everyday like how I’m living with it now, people will get bored and more so, annoyed. So, as long as I can handle it, I keep it to myself most of the time.
Everyday, every hour, sometimes even every minute, can be different when you’re disabled:
Disability and chronic illness is not only life-long, it can also be extremely unpredictable. One day, my symptoms and pain can be relatively well managed, that’ll most likely depend on the seasons of the year, I tend to have a bit more good days/periods of a day during the summer months, for example. Then, a bad day strikes, sometimes without warning. Or some days, I can feel awful in the morning, but by evening, the storm/worst part of it had passed and calmed, I feel better. But I don’t ever know, or get to know. I don’t get to decide. I get called a “promise breaker” sometimes by friends and loved ones, when the truth is, my disability/illness is the real culprit for breaking promises!
I’m not “all better” when I’m smiling and out and about:
Disabled people, especially young disabled people (like myself), are reluctant to post on social media with their happy, smiling, going out and about photos and videos. Why? Because it’s so easy for healthy people to criticize and accuse us of faking. I’ve had people in my life tell me that, I can go to places or have fun and I “looked fine” but, I can’t/don’t work hard enough to hold down a job. My response? Well, actually I can’t truly have fun, because I *almost always* have to “pay for it” later. Some “prices” are higher than others. Besides, my worth, should not be tied to how much I can earn to determine if I deserve good times. One more point on this, I promise: There was a time I used to attend a big once a year event before the pandemic, that also happened to be at a month where my health is the worst, I’d have to recovery for a long time afterwards. But was it worth it? Totally!
Disabled and living alone:
I know I talk about this often on the blog, but I don’t intend to stop. I can’t speak for everyone, even the ones that are in the same situation. But, I can tell you, in my experience, being disabled and living alone, had some terrifying moments. Here, I’m not talking about the loneliness, not even about doing chores, although those can be very real hardships. But, I’m talking about the number of times I’ve been in so much pain, or in a medical crisis, and can’t ask for help fast enough, and have to wait for help to arrive, all alone. And that’s scary. Thankfully, emergencies don’t happen too often. And as I mentioned earlier, living with my disability and chronic illness for this long, I am able to handle most situations on my own now, and when I do need help, I’ve also learned to do that a bit ahead of time and not wait until the very last minute. Plus, I think it’s easier for people to accuse me of “faking” being disabled is because I live alone, and I rarely go out when I’m so unwell. So, there’s really no way for others to see how unwell I get since they don’t live under the same roof with me. But I also said before (in other blogs), I love living alone, I don’t ever want to live with strangers, if I don’t have to. I think I’m old enough to not wanting to have “college roommates!”
Being disabled is a full-time job and it’s a demanding one:
When able-bodied people criticize me for not having a full-time job, this is what I tell them— Being disabled/chronically ill IS pretty much like a full-time job, and probably the WORST job one could ever have! Plus, it’s mostly all unpaid work, too. Oh! And, there’s no holiday or vacation time, either. A lot of time is spent on going to doctors appointments or medical tests, scheduling/chasing appointments, etc. Not to mention, it’s also very expensive to be disabled. You lose a lot of money by being disabled, and you lose more money than you can earn. And, for people with (some) medical coverage, the emphasize is the word, some, so not everything is covered.
Here you have it. A very ramble-y blog post on the side of being disabled that you don’t often see. Of course as I said, this is not a full list. I (very likely) left some things out. If I feel like I’ve left so much out, there might be a follow-up post in the future. To my disabled friends? Can you relate? To my non-disabled friends, did you learn anything? If your answer is YES, then, I’m so glad!
By: The Invisible Vision Project