Reblog: Being Disabled Is a Job

When you have a chronic or rare illness,  your “job” title quickly changes over to “professional patient”. This article is poignant in pointing out the many deficits that modern society places on those with disabilities, while suggesting changes to the paradigms of both chronic illness and  those receiving disability benefits.

Source: Being Disabled Is a Job

IIWK16: Invisible Illness and Incommunicable Diseases Ted Talk by Emily Reach White

Some of you may have seen me post this video before but it’s been a while and it’s one of my favorite chronic illness videos. Although this video specifically addresses the difficulties of being diagnosed with Lyme Disease, I feel like anyone with a chronic, undiagnosed, or invisible illness(es) can easily relate to the speaker’s father’s experience, including the judgement he faced for being sick up until the day he passed away – at Disney World, nonetheless. It’s amazing how unfair life can be sometimes.

Given that this week is #invisibleillnessawarenessweek and all, I figured this would be the perfect time to share.

Plus, who doesn’t love a good Ted Talk now and again?

#Thisischronicillness


Reference: Reach, E. (2013, May 1). [Tedx Talks]. Invisible Illness and Incommunicable Diseases: Emily Reach White at TEDxGreenville. Retrieved on September 29, 2016, from https://www.youtube.com/watch?v=VPWiCGSYtlw

Happy Labor Day

Since leaving my job for medical reasons, I can’t even count how many times I’ve heard that I’m so lucky to be able to stay home every day and not have to work anymore. Every time I hear this, though, I feel sick inside.

In one way, they’re right – I am lucky… Lucky I’m not killing myself anymore by going to work with a serious illness; lucky I’m not putting both myself and other people in danger just to get there and back; and lucky I’m not hurting the business or even patients by not functioning effectively enough to maintain my job. Unfortunately, there are some people with chronic illnesses who don’t have that same choice. So yes – I am extremely lucky in that sense.

However, not working is also a huge burden – on my family, on my finances, on my physical and mental health, on my self-esteem – on pretty much everything in my life. I would do almost anything in the world to feel better and get myself back to working – I’m trying anything and everything I can to hopefully get back there one day.

This isn’t an extended vacation – this is chronic illness.

I’ll trade you non-stop doctor and hospital visits, medical tests that are painful, surgeries that don’t fix the problem, being referred to psychologists and having people question your sanity, the inability to eat without being in pain or sickness, disability and insurance denials, being called a drug seeker, and being judged by nearly all of society just to go back to work.

Hope you don’t mind if chunks of your hair fall out, or that you pass out nearly every single time you have to take a shower. I hope that you’re not afraid of needles. You won’t mind having some brain fog, would you? It’s when you can’t remember anything – good luck doing my homework and writing that paper for me.

Oh, you also have some errands to run just to get the necessities of course but don’t forget the fact that you can’t drive anywhere by yourself. Your friend’s having a party that’ll you’ll have to miss and your other friend is mad at you because you don’t hang out with them enough. Those are the only two friends you have left though because no one else cared to stick around, not even most of your family.

Also, don’t forget to take those 13 different medications at different times throughout the day. Heads up – some make you really, really sick, others make you feel really tired and unable to function, and some keep you up all night. You can’t have any pain meds, though, because then people will just think you’re an addict – you didn’t need them anyways, right? Again, I’ll gladly trade places if you’d like – since I’m so lucky that I can’t work.

Being able to work is a huge privilege,

although many “healthy” people tend to forget this.

For the chronically ill, Labor Day is often just another reminder of what we many of us have lost to our illness. So when you’re off celebrating tomorrow, don’t just be grateful for having a day off- be grateful for your health giving you the opportunity to do so and please be thoughtful of those who may not have that same chance.

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