Life with MS

Psychotherapist Allison Shadday and attorney Jeffrey Gingold both adjusted their lives and goals after MS changed their careers. Last spring, they hosted a MSF teleconference about cognitive changes in MS. Many people had questions about what happens when MS symptoms lead to job loss or early retirement. This issue of MSFocus brings Allison and Jeffrey together again to share their knowledge as well as their personal experiences about moving on after MS changes your career.
 
Coping when MS forces you to leave your job
 
Allison: One of the most difficult challenges you may ever face is the loss of your job due to MS. It is critical that you acknowledge your feelings and grieve, if necessary. Seek out the support of others who understand what you are going through, such as a local support group or an online forum. While change is difficult, it is also important for you to be proactive during this transitional period to avoid feelings of victimization or hopelessness.
 
If you are not ready to leave the work force, talk with a vocational rehabilitation counselor or an occupational therapist. They can help you develop new skills and strengthen the ones you already have so that you can explore different career opportunities. You may also find a way to work “differently.” I’ve worked in modified capacities, including part-time, on-call, or as a consultant, as my MS symptoms have ebbed and flowed.
 
Jeffrey: While MS may compromise your ability to continue in a specific field of work, your education and experience are still both useful and needed. Take your skills and attach them to a purposeful activity. Improving the lives of others can provide a powerful sense of purpose. While it is nice to feel appreciated at home, carrying our domestic tasks does not necessarily provide enduring self-worth for everyone. However, volunteering or pursuing continuing education can be very fulfilling and allow you to realize that MS has not marginalized you. In fact, a new activity might help you discover a new path or fulfill a dream that you had always planned to pursue someday.
 
Maintaining your sense of identity after leaving a career
 
Allison: Many of us are defined by our careers. It may take a conscious effort to rediscover the parts of yourself that remain constant, regardless of what you do for a living. This might include a sense of humor, or the ability to inspire, and to communicate well with others. Make a list of your strengths and talents, then explore ways you can use them on a part-time or volunteer basis. If you are feeling depressed, it can be difficult to recognize your own positive attributes. If that’s the case, ask a trusted friend or family member to help you. Sometimes, other people see our strengths more clearly than we see them ourselves. If you find yourself comparing the “new” you to the “old” you, consider seeking a role that differs from your previous profession.
 
Jeffrey: Ask yourself these questions: What was it that I truly enjoyed about my job? What was it that inspired me to get up in the morning? For example, a doctor may be driven by the desire to save lives. While that specific career may end, the desire to help others doesn't. There may be other options, such as lecturing and writing, tutoring and mentoring, or research. If you were a teacher and enjoyed working with children, explore volunteering or part-time opportunities at your local church or community center. There are many different ways to teach and fulfill that ambition. It may help to think of it as finding alternative forms of transportation to a desired destination. While MS has placed limits on my cognitive and physical abilities, I have come to realize that even my limited amount of volunteered time is valued by various organizations.
 
Responding to the question, "What do you do?"
 
Allison: What you do for fun is probably more interesting than what you do for work. So, talk about your hobbies and interests, your travels or volunteer work. When I was first diagnosed, my husband and I quit our jobs and traveled for a while. People were much more curious about our trip than what I did for a living. 
 
Jeffrey: When I retired as a litigation attorney, my 10-year-old daughter asked, "What do you do during the day, Daddy?" While I no longer have a formal title or business cards, I proudly tell my children that I am a volunteer advocate for the MS community and MS-related legislation. At my own pace, I write and speak nationwide to increase awareness. "I try to help people with MS," is my answer. I have realized that I am more than a person in a suit and tie with a briefcase. In fact, my efforts as a volunteer advocate have positively impacted more people than my professional career as an attorney. My life has never had more purpose than it does now, regardless of my job title. 
 
Managing fear, negativity and self-doubt
 
Allison: There are times when I have doubted my abilities and myself. I sometimes forget words when speaking to a large group of people with MS, but I know that I am in a room with people who understand. Although I may not be as articulate as I once was, I still have valuable information to share with others. I can serve as a role model by not having to do everything perfectly. Naturally, this has been a process, but MS can teach us to be more accepting of our limitations and of ourselves. I try to keep in mind that no one is perfect, whether they have MS or not. That shouldn’t stop us from trying to contribute in whatever way we can.
 
Jeffrey: When the MS twister blows through and strips away the layers of your professional persona, what do you find? Perhaps, that the relationships in your life and your true purpose are not anchored to a specific job. Your ability to remain open and receptive to assistance from others can result in a wellspring of support from your friends, coworkers and family. Leaning on another person or seeking their advice is not a sign of weakness. Often, another person’s insight opens doors into areas you may not have considered on your own. Talking with a career advisor, counselor, or religious figure could help you to identify a new purpose or tap into new interests. Sometimes, you need to give yourself permission to be “selfish” and focus wholeheartedly and enthusiastically on yourself.
 
What about the financial effects?
 
Many people who lose their jobs because of chronic illness are left in a terrible bind. Our society and its current policies simply do not support individuals in such circumstances. If possible, consult with your insurance agent, financial planner, and attorney prior to any major change in employment status. They can help you to understand your rights and the financial effect of your decision, plan the best exit strategy, and avoid unintentionally terminating your rights or benefits. The following resources may be helpful:
 
Insurance Solutions –Plan Well, Live Better
A Workbook for People with Chronic Illnesses or Disabilites
By Laura Cooper, Esquire, Demos 2002

Women, Work, and Autoimmune Disease: Keep Working Girlfriend
By Rosalind Joffe and Joan Friedlander, Demos 2008
 
www.keepworkinggirlfriend.com
 
Allison Shadday is a psychotherapist who treats individuals with MS and their families. Diagnosed with MS in 1994, she is the author of  MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis.
 
Jeffrey N. Gingold is the author of the award-winning book, Facing the Cognitive Challenges of Multiple Sclerosis. He is the recipient of the NMSS Wisconsin Chapter’s 2003 Outstanding Volunteer and 2006 Innovative Volunteer Awards, and recently published his second book, Mental Sharpening Stones.
 
(Last reviewed 7/2009)