Comments on: When You Talk About Chronic Illness

By: Rosalind

Rosalind — Mon, 12 May 2008 19:33:52 +0000

WOW- thanks for all that great information. Rosalind

By: Amy

Amy — Mon, 12 May 2008 08:06:34 +0000

It is hard to know when and how much to divulge to an employer.
If you have an occupational health nurse on your worksite, you might be able to speak with them. But check your state’s interpretation of HIPAA laws first; in some states, since HIPAA grants states a lot of leeway to make their own laws for workplaces, none of your information is secure. In others, it’s secure if your occupational health office charges you for a visit, but not secure if it is a free service. In still other states, no matter what the occupational health office does or does not charge you, your health information is secure unless it’s workmen’s comp.
Also, for FMLA (Family Medical Leave Act), you can fill out papers for intermittent FMLA for yourself. Most places you have to work full time and have been in the job for ayear. They go through your benefits counselor, but in that case, all your manager needs to know is that you might have to take time off for your own or a family member’s chronic conditions, and they can’t discipline you for missing time under FMLA unless they can prove you were pretending to be ill. That might give some folks the needed protection.
From what I have seen, Wisconsin has to be one of the most invasive states when it comes to employee health records. There’s a website called HIPAAcow or something similar, and it tells you on the site you’re not protected there from your employer’s prying eyes in your medical records. Also there are a lot of privacy websites dealing with all types of privacy, including HIPAA, that can give you more information or at least links to know where to look to find out how much protection you have of your health records at work.
If you can garner some protection for yourself that allows you to keep a job for a while longer, sometimes you can find a way to translate your skills into something else. Online universities are looking for masters prepared people to be online teachers/coaches. If you’re not master’s prepared, there may be something else you can do that is not as taxing. If you can’t stand for long periods of time, try and find out what job you can do that would allow you to sit and uses the same basic skill set - do some online learning/research to fill out your knowledge gaps, and see if you can move to a different job. An example is nursing. Most people think nurses all work in hospitals or clinics, but many of us work in computers, occupational health, as supervisors, in quality improvement, in staff development in hospitals, as community health nurses, or visiting nurses, or even work for PACs to help improve funding to make nursing a physically easier job (e.g., safe lifting initiatives, smarter buildings, smaller storage depots of supplies that mean you don’t have to walk as far to get what you need). Nurses are in ergonomics, in cardiac labs and in radiology deparatments, and they sometimes train to provide legal counsel. Ask yourself what the options are in the job you do. Perhaps they aren’t as broad as nursing’s opportunities - all of which really require more time doing hospital based nursing to get a better depth of basic knowledge - but perhaps there are other things out there.
Hopefully some of this information will be useful to someone; I know when I got this from others, it helped me, so I am passing it along for what it’s worth.

By: autoimmune disease

autoimmune disease — Sat, 10 May 2008 23:47:57 +0000

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By: Rosalind

Rosalind — Thu, 08 May 2008 15:57:00 +0000

Hey there, Diana - Those are great points. I think you misunderstand my intentions and I’ll try to clarify.

My focus IS to get people to stay in the workforce but I also recognize that’s not always possible. I left for two years — due to no bowel control and raging fevers –and only went back after training for something new and then very slowly and tentatively. For some people , the current “workplace” is never going to work for them given their situation and their skills.

I’d been a free lance photographer, multi media producer, high schooll and college teacher — none of which I could do with my current health. It wasn’t obvious to me how my skills translated to creating and building my own business as a coach. It took a lot of time (10 years!) to create something I could do with success. It takes motivation and determination, resilience with failure and the ability to support yourself (or have someone who can support you) while you’re doing this. No doubt - that’s not everyone

Obviously , it doesn’t pay to say you’ve got things under control when they’re not. Nor that you’ll get the work done if you can’t. Your only recourse IS to figure out what you can do with your limitations –and your talents and strengths. It sounds as if you feel you’ve exhausted all your own ideas — that’s when you need to get out of your own box. In the next few weeks, I’ll be announcing my Working with Chronic Illness Home Study System - that would be the place for you to start.
Let me know how it goes for you.
Rosalind

By: Diana

Diana — Wed, 07 May 2008 19:01:17 +0000

When I speak and write about how to talk about your chronic illness, I emphasize the need to make to make two things known:
(1) You’ve got things under control
(2) That this will not be prevent you from getting the work done.

And what happens when:
(1) I don’t have things under control, and am unlikely to have in the foreseeable future due to the nature of my illness and the available treatments;
(2) It DOES prevent me from getting work done; with the added bonus of:
(3) An inflexible workplace, an inability to find more flexible work, and the non-possession of the skills/energy/know-how to go free-lance?

I’ve been reading your blog for a while, and I know that your focus is to get people to stay in the workplace, but what do you say to someone that doesn’t “fit” into a current workplace?

By: Rosalind Joffe

Rosalind Joffe — Wed, 07 May 2008 15:31:03 +0000

I completely undersatnd when you say that the disease
is rarely a problem and when you do discuss it, people respond with
disbelief. I had that happen a lot in my life and still find that it’s odd
to talk about disabilities when I look and seem like everyone
else.

So, I’m going to respond to your question with a
question. Why are you questioning your approach? Has it caused you
any problems? That’s where I’d start.

Rosalind

By: Becky

Becky — Wed, 07 May 2008 15:26:31 +0000

OK, this brings up a question I have often struggled with.

I have myasthenia gravis, an autoimmune disease that affects the nerve-muscle junction. I am 35 and was diagnosed at 17. My disease is well managed, and only on very rare occasions (once every few years) does it flare up and cause me to be unable to function normally for a period of a week or so. I don’t look sick, and I have a very active life, so no one knows I have a medical issue unless I bring it up. Even then, I’ve been accused of hypochondria and “faking.”

Here’s my question: At what point, if ever, do I need to tell my employer I have a chronic illness? In the past, I’ve always gone with the philosophy of not mentioning it until something happens and it causes me to need to take a week off to rest, or I get an episode of double vision and can’t drive or read my computer monitor. At my current position, I was here 4 years before anything came up. I always figured that if I proved myself to my employer first, by being reliable, smart, and doing good work, they’d cut me some slack when I needed time off or some kind of accommodation.

Is this a good approach or not? Is there something better?

By: Diabetes » Blog Archive » When You Talk About Chronic Illness

Diabetes » Blog Archive » When You Talk About Chronic Illness — Wed, 07 May 2008 05:18:37 +0000

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