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As someone living on disability due to the effects of my condition, I thought I’d share some thoughts on what it is like to live on disability.

I have only had disability benefits for less than a year this far, but it has been almost three years since I was laid off from my job due to my deteriorating health and I have not been able to take a job since as I was already at a level where I couldn’t even have functioned in a less physically demanding work environment. Seeing how I can’t sit for long, am both sound and light sensitive, even a “simple office job” wasn’t and isn’t possible.

Filing for disability isn’t something you do because you want to, it’s something you have to do because you aren’t able to take a job, no matter how much you want to go to a regular job, doing so just drains too much from you, putting your health and well being at risk. Sadly there are people who abuse the system, so many who are genuinely ill have a hard time getting approved, some may have to appeal several times before finally being approved. One would think the people working with your case would realize that you truly need to be put on disability if you get denied and appeal each time, it’s not without reason that the person appeals when their application is denied!

People on disability are sometimes seen as lazy or unmotivated by the general public, the general public who hasn’t got a clue about what it is like to live with a debilitating condition, a condition where simple things the general public takes for granted, may be a major achievement for you, there also tends to be a lot of medical appointments in our lives, and a big need to just lay down either to rest, or lay down to do things- I’m laying in bed as I’m typing this. Our “full time job” is to manage our health and pace ourselves, and believe me, living with a chronic illness can indeed be a full time job chasing after different doctors, going to appointments and everything else. You basically have to be at full health to have the energy it takes to be sick.

Living on disability doesn’t mean you do nothing with your life though. We’re not just staring at the walls of our bedrooms! We tend to be active in social media, we have hobbies, we do everything our bodies allows us to do, and often push ourselves beyond our ability. We find things to fill our days with, things that are worthy, and we have a purpose in life! We’re just not able to follow the norm with getting up every morning, go to work, work all day, go home, fix dinner and all those things that most people would call a normal day.

 

A normal day for me can look like this: Fall asleep after dawn, sleep poorly for a few hours, need hours to properly wake up, go on some errands if having any, go to appointments if having any, calling different clinics if needing to see anyone in my medical care team that consists of two occupational therapists at different clinics in different towns, orthopedic technician in yet another town, family doctor and from time to time, gynecologist. I *should* also be seeing a neurologist or neurosurgeon and cardiologist but I haven’t gotten to it yet due to my family doctor not knowing what to do with me and being very slow with referrals. I also happen to live in a country where some of my suspected conditions (occult tethered cord, cervical instability and Chiari malformation) aren’t widely recognized, so I’m on my own basically, at least until I am able to find a doctor who recognizes those conditions and can confirm or rule out.
When I have been outside somewhere, I usually have to rest for at least an hour or two or I won’t have energy for the rest of the day. Failing to rest properly may cause pain flares and worsening of the fatigue.
I spend a fair bit of time on social media, talking with others living with chronic illnesses and raising awareness for my conditions and other rare conditions. I may also work on some projects that I have to fill my days with more meaningful tasks, it’s things I do because I like it, and it’s things I do completely on my own conditions.
I may watch a movie at times, often at night when I have nothing better to do at the time and am not able to sleep.
Then I fall asleep again sometime after dawn.
This is just my life, someone else may have a completely different story.

I and others living on disability live a very rich and full life, we’re not lazy or unmotivated, we’re just unable to have the kind of schedule that a regular employment requires, due to our health situation and frequent medical appointments.

Don’t judge what you don’t know!

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