The Best Next Turn: Changing Careers

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers.  While I still work in the same organization, I work in a completely different field.  Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility.  I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle.  That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week.  Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people.  I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire.  My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself.  When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

  1. Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
  2. Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
  3. Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
  4. Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
  5. Be open to opportunities that surprise you and haven’t occurred to you.
  6. Do a good job wherever you are on whatever you’re doing.
  7. Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment.  If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
  8. Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
  9. Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
  10. Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start.  As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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When someone asks, “So, What Do You Do?”

We recently published an article by one of our community experts on how a simple small talk question can take on an entirely different meaning when battling a chronic condition.  Life with MS can make it extremely difficult, if not impossible, to continue working fulltime, often leading to career changes, unemployment, or life at home on disability.  This can make answering the common question, “So, what do you do?” incredibly challenging.  Invisible symptoms, seemingly good days, and the difficulty in trying to get others to understand your struggle can make your answer to this hard to put into words.  So many of our community members shared their own experiences with us after reading Devin’s article, and created some really great discussion.  We wanted to share some of the stories and responses we received!

Ways to Answer the Dreaded Question

“I am old enough now that I often just reply, ‘I’m retired.’ Then people look at me like I must have made lots of money and was lucky enough to retire early”

“I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though”

“Accept it. You are a fulltime caregiver…for yourself”

“So true, I feel like I’m always trying to justify myself to people! People see me and say, you look fine, you could work, but they don’t realize to be at that social gathering, I had to rest all week!”

How Life Without Work Has Impacted the Community

“I was an RN, and my role was to give comfort not get comfort from others. When I had to leave my last job, my world ended as I had always known it. I miss my used-to-be life”

“I couldn’t agree more. I’ve been on disability for almost 2 years now, and I hate every day of it. When I dreamed of not working, I didn’t dream of not being able to do anything else. I thought it would be fun! This is not fun. Feeling useless is horrible”

“I miss working! It is nice to be with other people. It allowed me to forget my MS for a little while until the fatigue would set in!”

Finding the Positive in the Struggle

“My family and friends want me to make ME the priority. This whole situation is rocking my world!”

“I was an electrical engineer. I spent a fortune on good education and then MS strikes. If there is any good in all this, it is that MS makes for a great friend filter. The friends that stick by you through the MS journey have been vetted and are truly friends”

“Couldn’t have said it better. Right now going through second round of disability approval! Never in my wildest dreams would I have thought I can’t work. Everyday is different, just don’t know how you are going to feel. One day, can’t get out of bed, next day feel like you could conquer the world. We just have to stay positive and hope we can take whatever comes our way!”

Regardless of how you answer this question, it was very clear to see from the community comments that you are not alone.  Even those who didn’t share their own experience often responded with a resounding, “SO TRUE!” or “This hit the nail on the head for me!”  Responses like these remind us why it is so important to be a part of our online community and support one another on this no-doubt challenging journey.

Let us know how you handle this question, or others like it, that can take on a whole new meaning when living with MS!

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Communicating with Employers and Co-workers about MS

While The Americans with Disabilities Act of 1990 (ADA) requires employers to provide reasonable accommodation to qualified employees and applicants with disabilities, it is often a challenging or difficult subject to bring up in the workplace. Individuals may fear that by asking for an accommodation, they may be judged or viewed as unable to complete the work at hand.

Navigating this process can be difficult, but there is a resource to help. The Job Accommodation Network (JAN) is an organization of employment experts that can provide confidential guidance around accommodations, or employment related issues.

On their website, they provide information about various conditions and offer helpful information about accommodations that have been used in the past for a number of different scenarios. To speak to someone directly, you can also reach the Job Accommodation Network at (800)526-7234 if you would prefer a more personalized one-to-one approach.

When it comes to discussing MS with co-workers, there are no set rules or regulations to follow. Just know that once the information is out there, it cannot be taken back. Opening up at work is a very personal decision and should be evaluated on an individual level. If you choose to disclose, prioritize who you feel should know about your MS (supervisor, direct team members, co-workers, and office staff).

Do you have any experience asking for accommodations at work? How was that experience for you?

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The Impact of MS on Everyday life

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

MSIA children impact

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

MSIA support system

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

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Work, work, work…

In today’s world, work tends to be one of the main focal points of everyday conversation. What work you do, how long you’ve been doing it, and what work you hope to do in the future become areas of focus. Therefore it can be difficult when some of these conversation starters touch on a subject that’s a little less defined for some people, especially those having challenges in a job position due to a disability.

Employment concerns and issues can arise for all individuals within the workforce, and when you throw a disease like multiple sclerosis into the mix these issues can cause frustration and confusion. Some individuals have difficulties deciding which work arena would be most appropriate for their skill set and abilities, while others question how long they will be able to continue the work they are currently doing. These are all relevant and important questions to consider, as many find themselves faced with these thoughts. What’s important to know is that work issues are something you can discuss with others so you are not faced with these questions alone. Your doctor, healthcare and social work professionals, family, friends and other resources may be able to assist in this process.

There are also other outlets of information and resources where one can possibly find assistance with employment issues. A Vocational Rehabilitation office is a resource throughout each state that is designed to assist those with disabilities on information and resources regarding employment changes. There is also a resource called the Job Accommodation Network, www.askjan.org that can offer information regarding workplace accommodations which can create greater accessibility to those with disabilities in the workplace. If you’re experiencing workplace issues you’re welcome to call the MSAA Helpline at phone (800) 532-7667, ext. 154 or email us at msquestions@mymsaa.org. Again, though employment issues can be challenging and create many difficult questions, there are potential resources to help you along the way.

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