Stigmas and sterotypes about chronic illness

[Dawn DeBois]

Hi @ashleygregory757,

I have to say my experience as a chronic illness patient has not been one that I’ve ever felt discriminated  against for. My employers, coworkers and friends all saw in my eyes and my face when I was really fighting against fatigue, pain and side effects. They knew I worked as long as I possibly could and didn’t stop until I had no choice. My doctors were all the same way.

However, my post concussion syndrome has been a totally different story. Fortunately, BioNews, our publisher,  has been wonderfully supportive. However, when I called 911 and went to the ER due to the severity of my symptoms, they were brushed off and put under “migraine” because I’m a migraine sufferer. My pleas for help were ignored and almost led to a dire outcome.  Unfortunately some people I know also took offense to my retreating to take care of myself and not embarrass myself by my inability to talk. The 6 months post concussion have been more trying emotionally trying to get providers and people to understand than I’ve ever dealt with in the 20+ years of being chronically ill.

Anyone who truly knows me knows that when I become quiet, something is severely wrong. I’ve had to learn  that some people just aren’t going to understand and to not waste any energy that I need to heal worrying about them.  I also had to get a new neurologist who has listened, taken my post concussive syndrome symptoms seriously and started me on various treatments and PT to help.  I’m so grateful to have found him.

 

[Price Wooldridge]

Happy Friday Ashley! Good question, and my answer has to be I’m not aware of any discrimination in the workplace. In fact, of my last two employers, both offered accommodations as needed. And, as LEMS can be almost un-seen by those who aren’t around me all the time, most people make no notice at all unless I bring it up.
Eventually it was me who decided I couldn’t ask for additional accommodations as my LEMS worsened. I retired.

[Ashley]

Hey @dawn-debois,

Thanks for the reply! I’m glad you feel that your coworkers and friends have been understanding. Mine have been as well. My work has made many accommodations for me and are always willing to do what they can to help me. Sorry you have had a rough six months. Unfortunately, we all go through those periods (with chronic illness) and it’s nice to have friends and a supportive network to get through those times. I know I rely on my friends to keep me going and cheer me up.

I know people that know you intimately are more understanding of chronic illness. I was more so asking about if you have felt discriminated against by the general public. For instance, say you park in a “Handicapped” parking space and had someone yell at you because “you don’t look handicapped,” etc.

I know I have experienced other coworkers making assumptions about people after looking up their medical history and before meeting them. For example, I’ve heard people comment on people with many allergies and they say “they must be crazy…”

I’ve had to correct some of my coworkers when I overhear this because I know how hurtful those comments can be and they are discriminative.

I was wondering if anyone ever felt like they were judged because of this.

[Ashley]

Hey @pricewool !

I’m so happy to hear that you have also felt your employers were accommodating to you! I understand why you retired and hope I can keep working as long as I can. Luckily, I feel the medical field seems to be very accommodating as well!

Yes, LEMS can be “unseen” as you said. I think sometimes this fact makes it harder for those to accept that we are “chronically ill.” It’s easy for people around us to sometimes forget that.

Thanks for your response as always! 🙂