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What I've Learned About Working With MS

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David Spero, RN - Blogs
By David Spero, RNAugust 27, 2021

I knew I could no longer work as a hospital nurse when my patient needed an IV and my hand wouldn’t stop shaking enough to insert the needle. I already knew about the fatigue that prevented me from getting up and down the floor to answer call lights, and the weakened leg that made transferring patients to and from beds and chairs dangerous for both of us.

You may have experienced issues like that in your own work. Two complications of multiple sclerosis (MS) that nobody talks about are unemployment and poverty. But we have options to keep working and earning money.

Modify Your Work

I realized I needed a less physical job, and fortunately I had the knowledge and communication skills to start working as a telephone advice nurse.  I had to learn computer skills and counseling techniques.

Telephone and computer jobs are widely available these days. Customer service and job training are two big categories. Other jobs we can do mostly seated include driving people and delivering things, both jobs that have grown dramatically during the pandemic. 

We can do many less physical jobs from home, including jobs that are typically done in an office. The advantages of working from home include the ability to take bathroom and rest breaks whenever we need to.  People working from home don’t have the stress of commuting; we can eat healthier food from our kitchen instead of pricier junk food from a machine or cafeteria.

Working from home isn’t for everyone. You can’t do construction or plumbing or waitressing from home.  It only works for jobs you can do by internet or on the phone.  But even in more physical jobs, you still might be able to get modifications that make your work doable.

I needed modifications when my hand symptoms and fatigue made it too hard to work nights on the computer. Fortunately, if your employer has more than 15 employees, as mine did, the Americans with Disability Act (ADA) requires them to provide reasonable accommodations -- changes that allow a disabled person to work. I was able to get them to buy me equipment such as a bigger screen and a built-up mouse that made it easier to work on the computer. Occupational therapy also helped me learn some job-related techniques.

An employer with fewer than 15 employees doesn’t have to accommodate us under the ADA.  I’ve had small employers refuse to hire me because they didn’t want to modify their practices for me. A lot depends on your relationship with the company and the boss, and your job performance. Working with an employer to find accommodations that aren’t disruptive to the job may go a long way.

Start Your Own Business

After 12 years, advice nursing was getting too physically demanding and less interesting. I transitioned into writing about health and then into other kinds of writing. I didn’t seek a job, only freelancing work. Freelance writing has been a great match; I only have to write things that interest me, such as this blog.

Other businesses some people with MS have done include tech jobs like creating databases or creating and moderating websites. Non-tech jobs include event planning and childcare. Tutoring and editing jobs are widely available on LinkedIn. I find that kind of work rewarding. If you have expertise in some area, you may be able to consult or teach what you know. 

I have friends who make needed money and avoid loneliness by pet sitting or house sitting. Some creative people make money with podcasts or videos on YouTube.

How to Get Health Insurance

One problem with most of these gigs is the need for health insurance. People often feel stuck in a job they don’t like because they need the insurance. If they’re not working, they may be afraid to lose Medicaid by taking a job. (When, oh when, will we get Medicare for all in this country?)

I’m so grateful that I eventually qualified for social security disability (SSDI), which comes with Medicare coverage. SSDI enables me to do work I like to do and makes a small contribution to society. 

Where to Find Help

Even if you can’t make enough money to support yourself completely, you can survive, help out, and do interesting and rewarding things.

In its Working With MS brochure, the National MS Society says, “MS does not mean the end of being and feeling productive. You should work ... if you want to. The real question involves how, where and at what level you will work.”

For help with work issues, contact the National MS Society (800-344-4687) to be connected to an MS Navigator.

 

To connect with other people living with multiple sclerosis join our  MS Facebook Support Group .

 

Photo Credit: Maskot / Maskot via Getty Images

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About the Author
David Spero, RN

David Spero, RN, became a writer and health coach after being diagnosed with multiple sclerosis in 1989. He writes books and blogs about living with chronic illness and the social causes of illness. A married father of two and grandfather of one, Spero is active in causes including health care, peace, and the environment. See his books; follow him on Medium or Twitter.

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