Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment. On top of that, and most of all, you must deal with the chronic illness itself and all that comes with it. So why does society oftentimes put more on our already full plate?
First, let’s talk about employment for those of us that are still able to work to some degree. So many people tell me that their employers refuse to accommodate their requests for a reasonable accommodation or that they are even afraid to ask for it. Or, worse yet, they have asked for it and are threatened, demoted, or fired. This is very sad to hear. No one should be afraid to ask for what they reasonably need to perform their job.
Ironically, oftentimes it’s these same companies that publicly tout how they promote and encourage diversity within their workforce. I personally can attest to the fact that having a chronic illness has changed me in many ways; ways that I think have made me a better employee, including one with more diverse perspectives and unique ideas. Like so many others I have talked to, I bring more to the table than before; yet sadly we are often thought of as less than. We are frequently tapped into for projects less often, which also reduces our opportunities for advancement and success.
One common accommodation many of us have is one that enables us to work from home full or part-time. This is often needed to accommodate our compromised immune system and depleted energy levels. Some employees have viewed this type of accommodation as a “perk” that we get. Please let me clarify this misunderstanding. It is not a perk by any means, it’s a necessity. It gives us no advantage in the playing field; we are simply trying to stay in the game.
While I am not on SSDI, I know many, many people in the midst of this process. And when I say process, I mean p-r-o-c-e-s-s. The paperwork is exhausting for anyone, but if you have brain fog, low attention spans, and a mountain of medical records, this stage alone is an endurance test. Then comes the hearings and appeals. All of which can take years. While a criminal is constitutionally provided a right to a speedy trial, a previously hard-working individual who is suddenly stricken with a disability must oftentimes wait years to receive any financial support. In the meantime, they struggle to stay in their homes, pay for much needed medical care, and scramble to afford daily expenses. I must ask why criminals have more rights here than a person with a chronic illness that did no more than simply get sick.
A more minor, yet daily example, is handicapped parking passes. Since I have gotten one, it has allowed me a few more excursions out of my house because of the time and precious energy it saves when I run errands. It makes me depend on my caregivers a bit less and gets me out into the world a bit more. It reduces my isolation. In short, it’s been a godsend!
So why do people care so much when they see me get out of my car that is parked in one of these handicapped parking spots? Do they think that doctors freely give them out? (They don’t!). I have one because I need one. What I don’t need is the scorns and judgment – each time I get one I feel myself being physically assessed by people as they determine if I am worthy of such a parking pass. On my particularly defiant days, I want to go up to them and say I have myalgic encephalomyelitis. Does that meet your criteria?? I know that word alone was daunting to me when I first heard it; that alone may put an end to their scorn!
This list, just a small sampling of many inequalities, is more than just that. It provides an opportunity to raise awareness – to the public, employers, the government, and all the other players that as a chronically ill patient that we interact with. Yes, we have special needs, but rather than judge them, learn about them. Spread your wings and focus on gaining an understanding of what it means to live with a chronic illness. Be a part of transitioning a hardship to a support system.
I suspect many of you have people in your lives with illnesses they simply have been afraid to share or chose to keep private. Unfortunately, diseases and illnesses hit close to everyone’s home though. Think of your friends that you do know with an illness. It may not be visible to others. Let this be a reminder that you don’t know everyone’s story. Giving the benefit of the doubt, showing compassion, caring and support to all can go a long way to making this world a better place – chronic illness or not.
Those of us with chronic illnesses have enough on our plates, striving to handle it all with courage and resiliency. There isn’t a single thing I named above that cannot be, should not, be changed. Employers, truly embrace the diversity that you speak so highly of and help your employees with disabilities rise to the top rather than holding them down. The SSDI system is sorely in need of revamping. A process that takes years to proceed through is too long for someone that has monthly bills to pay. And.. something as simple as lending a helping hand or even just a smile to someone you see parking in a handicapped spot may just be your opportunity that day to make someone else’s day.
Be that person!
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