MS and My Client Disclosure
When I first learned I had multiple sclerosis, I had just started my new consulting business. I was eager and excited to ply my trade. Helping microbusinesses was a passion I fell into. I spent three and a half years earning two Master's degrees. I was studying late at night, scamming free Wi-Fi at McDonald's or Village Inn when mine went out. Those days were over. Now it was time to go out there and make my mark.
Should I disclose my MS diagnosis?
Instead, I was hit with some unexpected news. The next question was what to do with my clients. Should I tell them up front that I had a chronic illness and might need accommodations? Or perhaps I could simply arrange my work life and not have to tell any clients. The way was not completely clear.
HIPAA, accommodations, and more
There are a multitude of articles about whether or not to disclose an MS diagnosis. So many variables are involved it is head-spinning. Topics regarding HIPAA laws are at the top of the list. It can be about one's legal rights and employment. Finding information on work accommodations follows closely.
As people living with MS, we often have issues regarding fatigue or pain. We can ask for more comfortable seating or for a flexible schedule. It may not be possible to have either one, but we can ask. Advice on navigating co-worker relationships is also important. Co-workers and other associates can be a source of help. It is not a given that an employer will have a positive reaction and become a source of help and not extra pain.
What about when you are self-employed?
Information on dealing with MS in a work environment helped to some degree, but as a self-employed person, it could only go so far. I needed to know how to deal with multiple sclerosis when I only had to answer to myself. I did not have to ask clients for a different schedule or a better chair. It was not up to them for better or worse. Any accommodations would be done by me alone and I would be alone in paying for whatever new needs I may have.
This freedom was good on one hand. I did not have to deal with formal company policies or fight through layers of people intent on making me quit. On the other hand, I did not have formal policies to help me or layers of people who were supportive and helpful. Regardless of which hand I picked, the self-employed route was not one where I could find a good deal of guidance.
My decision to disclose my diagnosis
With that first client, I decided to disclose. It was over a business lunch and I was scared. Not only was he my first post-diagnosis client, I felt particularly vulnerable since it was a client who was quite assertive in his dealings with me. I was not as confident as I should have been and I let my fear lead. I disclosed anyway. I was unsure how to broach the subject, so I just blurted it out, “I just found out I have multiple sclerosis and I will need to make some changes to our timetable.” His reaction was unperturbed. His mother was a nurse who had dealt with MS. He was familiar and willing to work with me.
I would like to say that it ended well. It did not. I was subject to the same problems employed people had. In my case, my client took advantage of my MS to take over the work and imply that I was incompetent. I learned quickly that disclosing is something that required me to be more discerning and less trusting - that open honesty may not be the best route in all cases. Employed, freelance, or self-employed makes no difference when making the decision to tell work associates about chronic illness.
Today, I am lucky enough to choose my own clients based on my own criteria. I am able to work pro-bono and pass along my accrued knowledge for free to those who need it. It is under these circumstances that I am free to let people know that I have multiple sclerosis. I am clear about my need to have the flexibility and that they will need to exercise patience. My openness has been rewarded with people who are kind and understanding. I hope this will always be the case, but if it is not, I will be prepared anyway.
Did you experience any type of flare-up after receiving a COVID-19 vaccine?