My fear was that employers would find out about my diagnosis of Multiple Sclerosis (MS). I have had a number of friends who have had great success in being able to disclose this diagnosis with employers, with little or no repercussions. I had a few negative experiences that left me almost crippled in fear at times that someone would find out.
The National Multiple Sclerosis Society website (wow, that’s a mouthful!) has a link that addresses this and makes recommendations. Their link is http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/disclosure/index.aspx. Among other comments they make on this valuable source, they state ‘ Although there may be good reasons to disclose medical information and very specific benefits to doing so, any decision you make today has immediate and long-term implications for your employment that need to be considered. So it’s important to weigh your options carefully before making a decision to disclose — keeping in mind that once information is given, it can never be taken back.’ It also makes recommendations on when to tell, who to tell, and why you want to disclose the information.
I took the same route every time: tell absolutely no one nothing until it was absolutely necessary. I was rarely in a position of having a choice: Every time I disclosed it, it was either because I had been hospitalized or was displaying such obvious symptoms that it was addressed by a manager. For the record, this is not always the best decision to make!
I had periods when I could disguise any problems with relative ease. Sometimes I wear an AFO (Ankle/Foot Orthotic) that assists with my balance and lowers my risk of tripping. Being the eccentric person that I am, if I was going to wear an AFO it was going to be colorful and represent my personality. I own two ~ one with princess straps, and one with the American Flag proudly displayed. They were slightly noticeable, to say the least! 🙂 I own numerous DME items (Durable Medical Equipment), however, and would have a near panic attack if I had left my walker or wheelchair visible from my car. Heaven forbid if I was seen in public in my whelchair ~ Ack!
I therefore only disclosed my medical information once it was necessary, and only to those people who absolutely needed to know. They say that God works in mysterious ways, and this would definitely apply to my last employer. My manager approached me early on after recognizing some symptoms, and asked me directly if I had a medical condition I needed to disclose. She stated the benefits of doing so, and something amazing once I shared my diagnosis. She not only had MS herself, but numerous family members did as well. Talk about someone understanding! I soon found that we took on a very different role when not in the work setting. She even asked my advice on a number of occasions about all sorts of things: treatments, thoughts on physicians and other resources available, and had even had the workplace changed to make it adaptable to her condition ~ long before I came along!
I am always quick to say that each person’s situation is completely different! My story is not anyone else’s, and I do not want anyone to think that my next steps will be theirs.
I did reach a point, however, where it was clearly affecting my ability to work ~ a lot. The disease had progressed. She showed grace as long as she could. We finally had a meeting to discuss issues because I truly couldn’t see where my MS was impacting my standard of work. I asked for examples. Be careful what you ask for! She began to do what is appropriate, from an HR point of view. She documented where I was making errors and how it was impacting my performance. We had a difficult discussion one afternoon about my options. She could have let me go, and I would have severely limited my future options. Instead, she put the ball in my court. After several gut-wrenching days of thinking through the implications, as well as my neurologist’s desire for several years that I would not continue working ~ I gave in. That is how I felt. I took the appropriate steps to begin applying for disability.
Was it the right decision? For me, it has been. I now recognize this was the best decision. It does NOT mean it is the right choice for everyone, and it needs to be well-thought out before making such a permanent decision.
The link listed above is a great starting point for asking some hard questions, if you or a family member is in any part of this process.
What made the difference for me was pretty simple in the end: I addressed my fears, and knew I could only have an answer to these questions by prayer. I had allowed the fear of ‘what if’ to rule me for years as I attempted to work consistently.
- Will I be treated differently
- Will I be demoted
- Will people define me by my diagnosis instead of my work
- Will coworkers use it as an excuse for any error I make
- What would happen to me financially
- What would happen to me socially ~ will everyone forget about me
- Will people understand once I tell them
- Will people believe me
The list is endless! I wrestled with this question for a long time. I am glad I did so that when the final decision was made, I knew it was the right one. It was the right decision for several reasons: my employer knew I was not able to work any longer, my neurologist had this well-documented, and I finally had peace about the situation. (This is not a picture of my physician, for the record.)
I do struggle with an ‘identity crisis’ at times. Do I have worth if I am not working outside the home? What exactly IS my purpose? I was in no rush to answer the second question once I was on disability. People would ask me what I was going to do with my days (I am in my mid-40’s), and I said the same thing every time: I am going to wait until I know exactly what my purpose is. I don’t believe in coincidences, and I felt strongly that this was a new chapter in my life, not the end of my life.
I took baby steps towards complete disclosure. First, my immediate family knew. My closest friends knew. That circle expanded to more casual friends. I discussed the pros and cons with many, many other people to obtain all the knowledge possible. I prayed for wisdom. I would never tell anyone what they should disclose to anyone without careful thought, and one comment ruled everything:Keep in mind that once information is given, it can never be taken back.
You may not be facing the same situation at all, but I many of the same questions apply when considering disclosing personal information. You may be going through a divorce, a bankruptcy or serious financial problems, a career change, or many other possibilities. My desire is that each person facing a major decision, whether it is similar to mine or not, would ask themselves the hard questions. Write out scenarios, & the pros and cons. Be educated about the choices if you pursue this decision. Gain support from as many people proactively as you can. Once you have peace about the matter ~ stick with it.