(WOMENSENEWS)—In July, scientists discovered a new way to detect multiple sclerosis, or MS, at much earlier stages of the disease.
This could benefit women, who represent more than 75 percent of the 400,000 individuals in the United States diagnosed with MS.
But it still might be a challenge for you to know how to personally help your colleagues and coworkers, since 60 percent of employed women with MS try to hide their symptoms at work, according to a national survey from earlier this year.
Recently, a friend revealed for the first time that she herself has MS. She is an amazingly successful professional and a mother of two young children. One of her greatest fears is she may be viewed as a “whiner” or “complainer” if she were to “out” herself at the workplace and let others know the challenges she faces.
This friend acknowledges that she is fortunate to have an invisible disability, and can choose not to disclose it to people for the moment. But with so many people in the U.S. living with some kind of disability — more than 1 in 10 working adults – it’s important to destigmatize all these conditions.
This conversation with my friend inspired me to reach out to Kimberley Munoz, a student I know who has MS. Together we have co-written this piece to bring light to the issues that both she and my friend face and to provide ways we can provide them with more support in the workplace.
For starters, both Munoz and my friend have emphasized to me that MS is different for everyone.
Munoz’s symptoms include extreme fatigue, pain in the spine, constant pins and needles in her limbs and occasional shooting pain or numbness down the left side of her body. In addition she has “droop foot,” which caused her to undergo knee surgery because as a result of not picking up her foot she tripped over it causing a small tear.
While MS affects her walking, which can be seen sometimes, this is not what is most embarrassing. What bothers her most is a fear of disappointing others, especially coworkers, advisers and faculty. “When I have to cancel a meeting, miss work or a class, I feel like I am letting them down,” she says. “I also tend to think that they will be disappointed in me or that they think I am not smart enough to be in this program.”
Here are a few things we can do to assist people with MS:
Protect access to disabled parking.
These spaces are there by law for the people who really need them, and they should not have to constantly defend them. Munoz’s symptoms get worse when she has to walk longer distances from her car when it is hot and humid.
Provide adequate seating options to presenters and at networking events.
Standing for more than 20 minutes can be like torture for someone with MS.
It is awkward to “out” yourself and ask for a chair. Munoz and my friend said they would rather leave an event than ask for the only chair or if they can sit down.
Watch your implicit bias.
These are our unconscious attitudes or beliefs. My friend has been told on multiple occasions that “people with MS are faking it, since some days they seem perfectly fine.”
“I am not one to whine or complain or cry so I will not show you on the outside that I am in pain,” Munoz says. “I am in pain every day. It never stops it just eases up with medication that makes me drowsy.”
Understand that there is unbelievable stress.
It is difficult for most of us who do not have MS to imagine going to bed each night and not being sure if we will be able to walk, think or perhaps even see the next morning. Employers should provide services for stress management and allow for flexible working schedules.
Munoz was once told by an employer to let them know when she will have MS problems so they can get someone else to cover her shift.
“I told them over and over again that I cannot predict it but they insisted that I let them know. Knowing when you have a problem with MS is like predicting what day you will get the sick,” Munoz says.
Realize the potential for social and professional isolation.
Because of all the stress and other issues that they are dealing with, our colleagues and friends with MS may not have the time or energy for many social events. Be inclusive, and invite your colleagues and friends to events, but be understanding if they can’t make them. Also reach out and see if there are other ways to hang out socially that might be easier.