The article on ABC News really struck a cord with me today. An article that talks about how “Juvenile Arthritis Makes Adult Employment More Difficult” – all based off a study. If you haven’t done so already, please read the article because this blog post will make more sense. 🙂
As someone who was diagnosed at the age of 16, and true not with juvenile arthritis, but with ankylosing spondylitis, I am in two minds about it.
On one hand I completely and totally understand that arthritis can be a complete and utterly horrific disease – degenerative or auto-immune and how it can completely change your life path. Well, because I’m living with it. On the other hand, I see it as an opportunity to do something positive. To make a change and to keep fighting.
Maybe its the health activist in me. Or just the activist in me, but this one of the many main reasons why we need to find a cure for arthritis. Sure, it would be nice to not be in pain, to not worry whether your joints are going to fall apart, let alone those damn organs, but also for our livelihood.
To have the freedom of not stressing over the right or wrong path. The freedom to choose and not have choices be made for us. The right to use the money for for a new pair of shoes food instead of a co-pay, or hell – the entire bill. The right to do the job we wholeheartedly love instead of choosing a job that fits with our disease.
The fact that the study said and I quote “Today’s study, published in the journal Arthritis and Rheumatism, found that the degree of disability matters. The study followed 103 adult patients who had been diagnosed as children with juvenile arthritis. People who suffered greater disability as children accomplished less as adults. They were less likely to be employed and they found it harder to hold the jobs they got. The majority of those who were unemployed said their disease was the reason they couldn’t find work.”
Or this quote: “”The real issue is they haven’t had enough pre-employment experience, whether it’s babysitting, volunteering or working a paper route,” she said. “What happens to kids with chronic illnesses is they don’t get to do that.””
MADE ME CRY!!! My heart shattered into a million pieces. BROKEN!
I wish every kid could have as much luck as I did. I even wish every adult would have as much dumb luck as I did and still kind of do. To scoop them up in my arms, hold them tight, cry with them and tell them – “There is a future, I promise.” To then go on and tell them “follow your dreams – start a company, freelance, work part-time” all the while I would have enough confidence of saying “don’t worry about health insurance, any company would be lucky to support your dream.” Wrong. BIG FAT WRONG!!
Do you see the catch 22? Do you see it?
If not, here it is. Painted out:
If a kid is unable to have pre-employment history, or a young adult is forced into making a touch decision to work for themselves because no one will hire them or the fact that they can’t complete a full day worth of work, is scary. Why is it scary? Most of them are unemployed, underemployed, or self-employed. The most horrific part? By federal law, health insurance companies are not allowed to discriminate you by your pre-existing condition. Yes – a fact. YAY! Celebrate! Freedom!!! WRONG!!! If you are not with a group plan, health insurance companies are now pricing these adults out. PRICING OUT. What does that mean? They’re making it so expensive to afford health insurance that they still can’t get it. Win for health insurance company. Fail for pre-existing condition. Hello government assistance for the disability.
This post isn’t about politics or even the economy. Its about arthritis. How arthritis truly is unacceptable because the 1 in 5 Americans are just trying to just deal with it and hopefully fight it. The parents of the 300,000 children are trying to cope with it and then fight it.
It makes me sick. Arthritis isn’t a club, it isn’t a choice, its a threat. A threat to our children, a threat to our livelihood, a threat to our peace. So, the next time your in a group with other people, look around. I bet you that 1 of them just might have a type of arthritis. After all, there are over 100 different forms. The fact of the matter is, I doubt you could truly pick them out. That’s the curse of having an invisible illness.
So, I don’t know about you, but I will keep fighting the good fight. This is exactly why my job as a health activist is not done. This is one of the many, many, many, many, many, many reasons why a cure is more than just needed. Its required.
- How Juvenile Disabilities Hinder Careers (abcnews.go.com)