Many Raynaud’s sufferers challenged at work could use a resource to help them deal with issues like thermostats that – while set for the comfort of most workers – leave them freezing, resulting in numbness and pain and even an inability to perform job tasks.
At the Raynaud’s Association, we hear many stories from Frosties who face hardships with co-workers and supervisors who simply do not understand our challenges and are unwilling to accommodate our needs. Compared to someone in a wheelchair, for example, our health concerns often are not taken seriously.
Raynaud’s sufferers certainly aren’t alone. According to the Centers for Disease Control (CDC), some 10% of adults across the U.S. who identify as having a disability of some kind have an “invisible” disability. While Raynaud’s by itself is not a disability per se, it does present problems for those whose cold sensitivity makes their work environment problematic—such as when air conditioning causes a painful flareup.
Trish Robichaud, an Ontario-based work/life inclusion coach and accessibility compliance expert, has devoted her career to helping entrepreneurs and employees who have disabilities and other health-related issues of all kinds. Just as important, her business—Changing Paces—works to ensure that companies of all sizes support such employees and customers.
“It’s not just a matter of the law,” she says. “Making businesses accessible to all people is simply good business.”
Indeed, Trish cites the results of a four-year study by Accenture, the Fortune 500 multinational professional services firm. “Companies that hired disabled employees increased their profit margins by 30%,” she reports. “Disability inclusion is an opportunity, not an obstacle.”
Trish knows firsthand the challenges disabled and physically challenged employees face. In 1993, when she was a credit manager at a national Canadian radio and TV company, she disclosed her multiple sclerosis diagnosis to her supervisor. “She was skeptical and unsympathetic,” Trish recalls. “She even called my neurologist the next day to ask about my prognosis and work limitations.”
Not long afterward, Trish was fired from the job, ending a 12-year career in that field.
Realizing that she was not alone in facing such discrimination, she sought to make a difference for all disabled workers. She channeled her anger and frustration into a new career.
Trained in the facilitation of adult education, support counseling, self-advocacy, social action and life skills, Trish has been providing counseling and advocacy support to people with chronic illness or disability for well over 25 years. She has been facilitating disability awareness training and consulting with organizations in the private, non-profit, public, and municipal sectors for over 15 years. She helps individuals with disabilities/health conditions navigate their work environment so they can thrive, and consults with businesses to ensure they are making their workplace accessible.
As founder and CEO of Changing Paces, Trish is a multiple award-winning entrepreneur and sought-after expert and motivational speaker who is the recipient of several prestigious awards.
Among the many services her company offers to businesses is a “tip sheet” for supporting customers and employees with a wide range of issues: physical (i.e., those with assistive devices), hearing, intellectual, visual, mental health, learning, etc. Working with corporations consumes about a quarter of her time. The rest of her work is with people employed in jobs with challenging obstacles for their health.
“My passion now is helping other entrepreneurs and employees living with disability or chronic health issues to develop just the right formula for their own work/life balance,” she says. “I take pride in helping my clients build a business that will honor and accommodate their health, while providing a stable income that will keep them afloat when their health is rocking the boat.”
Because she offers counseling exclusively online, anyone can access her services. In fact, says the Canadian resident, most of her clients are in the United States.
These days there are regulations in place to protect disabled workers (e.g., the Accessibility for Ontarians with Disabilities Act, and the Americans with Disabilities Act). Workers in the U.S. can access the U.S. Government website Your Legal Disability Rights if they face discrimination or harassment at their jobs. Various states have their own regulations too.
“The workplace is not the only problematic area,” Trish says. “When a client with Raynaud’s and scleroderma told me she was reluctant to ask her adult son for help, I told her that accepting such an offer was a gift she was giving her son. He got to know his mom better and deepened their bond. She and her son were helping each other.”
Advice for Raynaud’s Sufferers Challenged at Work
Communication is key, Trish says. “For example, instead of simply saying, ‘I’m cold and I need you to turn up the thermostat,’ you might explain how the cold affects you. Use descriptive phrases such as, ‘When I feel cold, my fingers and toes become numb and very painful.’ Or you can show your fingers turning colors and say, ‘When my fingertips turn colors like this, it means the pain is coming. When the pain starts, I can’t turn it off. On a scale of 1-10 it might be a 5 or even more.’”
The same communication approach also can be effective in the workplace. “Maybe your employer will allow you to use a space heater or even allow you to work from home,” she suggests.
Trish also advises employee clients about “disclosure planning.” If Raynaud’s is going to impact your work, such as when a job involves being outdoors or in refrigerated spaces, she discusses issues including who to tell about their Raynaud’s, when to tell, and how much to tell.
“The key is to use phrases that others can wrap their heads around. Learning how to talk about your condition can go a long way in helping others to be supportive.”
A common issue for many with serious Raynaud’s issues (such as ulcerations that worsen with cold exposure) is parking in handicapped spaces. “You may get a nasty look or a comment that you don’t look handicapped,” Trish says. “If your doctor approves a special parking permit to allow you to park close to your destination, you might respond that 75-85 percent of disabilities are invisible. That’s a fact.” Indeed, if Raynaud’s is secondary to scleroderma, lupus or another underlying disease, there may be lung, heart, joint and other organ involvement that limits mobility.
In addition to the many informational resources the Raynaud’s Association provides, Trish recommends consulting the website of the Invisible Disabilities®Association. They offer a Disability ID card that may help to convince others that your pain is real.
Thank you so much for offering the Raynaud’s Association! Your pamphlet is wonderful and reassuring.
By L. K. (CA)
Your Pamphlet Is Wonderful and Reassuring
Glad to find this page. Newly diagnosed…any ideas or experience would be so welcomed at this point.
by H.G. (Facebook Fan)
Glad to Find This Page
Thank you for the information…my daughter is suffering quite a bit but I think she is relieved that she is not alone and her pain is not in her head…We are both thankful for the support given and information.
by B.N. (Australia)
Thankful for the Support
Just discovered your site, I found it very informative, thank you.
by M.P. (Canada)
Thanks so much for having this page, I’d be so freaked out without you guys!
by L.D. (Facebook Fan)
I'd Be So Freaked Out Without You
Hi, I’m glad I found this page, it helps to know that others suffer from this, too…Thank you for your page : ) x
by S.C. (Facebook Fan)
Helps to Know Others Suffer, Too
I thank you guys for creating this page and working to help people who suffer with this like I do.
by K.M. (Facebook Fan)
Thank You for This Page
The Raynaud’s Association was my sanity saver!…It helped me and my doctor diagnose my Raynaud’s and continues to be my authoritative resource! The support I receive has been absolutely amazing!
by A. M. (Facebook Fan)
The Raynaud's Association Was My Sanity Saver!
They (Raynaud’s Association) helped me in so many ways. First, that what I had been experiencing for so long had a name and I wasn’t alone. I had not come across anyone that experienced it in their nipples,” she said.
By N. R. (AR)
Helped Me In So Many Ways
Thank you, Raynaud’s Association…I am glad that I’m not alone!
by I.C. (Facebook Fan)