A woman works from home in Pajamas

The Jungle of Looking for a Job With MS

Living with a chronic, progressive disease like MS presents many challenges. One of those challenges might be related to employment. Can you keep working when diagnosed with MS? How do you adapt to changing abilities while at work? How do you apply for and successfully obtain Social Security?

These are important questions. But ones which I won’t be discussing today. Instead, I want to talk about my recent experience in looking for extra work. It was quite eye-opening.

Gig worker

I am a classically trained musician, who has been a freelancer for years without a single, full-time job, either performing with a big orchestra or teaching at a large university. As a freelancer, you are an independent contractor. You are a “gig worker.”

What that means is that you are self-employed. You are your own boss, even if you report to other organizations to get a job done. You are paid by your “clients” and you are responsible for paying both employer and employee taxes to the federal government. As a self-employed person, you are your own boss, administrative assistant, human resources department, customer service representative, recruiter, and more.

Finding a job with MS

Recently, I started to search for additional employment opportunities. I got excited when I found a job posting where a local independent lawyer was looking for an assistant to work part-time from home, on their own schedule, to basically help with updating files, retyping documents, and following up on communications with clients. These are all things that I could easily do and I am perfectly suited for this type of part-time work. But my resume didn’t earn me an interview.

As I started looking for other opportunities on the same job board, I noticed time and time again that “entry-level” jobs almost always require years of experience doing similar jobs and degrees in specific fields. I’m a smart person. I’m organized. I’m trainable. But the lack of specific experience as a full-time employee for someone else kept me from gaining an employer’s attention. Even a receptionist position at a local physical therapy office required 2-3 years of customer service experience, with experience in medical billing preferred.

Beware the junk job listings

After chasing down a few potential openings, I began to receive email notifications of other job openings that I might be interested in. Unfortunately, I quickly discovered that so many of these listings were outdated or closed, fronts for companies who wanted people to answer surveys for pennies, or listings that had nothing to do with my skills set.

Every morning and throughout the day, I'd have to wade through all of the junk emails just to find the messages that are important from people and organizations I know. It has become quite discouraging to be honest.

Somebody likes me!

One email I opened was actually legit and the recruiter who sent it followed up with a phone call. This contact came out of the blue. She had found my resume on a job board and was aware of a temporary position for which I am qualified. Speaking with her led to an updated resume, submission of work samples, phone interview, and job offer.

After I accepted the temporary position, I was almost giddy. “Somebody actually likes me!” I said to my husband. Of course, he assured me that lots of people like me. But this boost felt different.

Background check

Here’s where I feel my story gets interesting. Not having applied for traditional employment since I worked two jobs in music libraries in college, I had not encountered the background check process. It turns out that if you are self-employed, there really isn’t a separate employer to list. In lieu of calling an employer, I was asked for copies of a W2 or paystubs, both of which I do not receive. But I think we have that worked out.

Pre-employment drug test

This detail is the one that surprised me both in a concerning way and an amusing way. There are certain substances that are commonly tested for in an employment-related drug test: amphetamines, cocaine, marijuana, opiates, phencyclidine. I know that I do not use any of these substances, so I was surprised when I received a call to discuss my test results. Additional categories of substances tested for may include alcohol, barbiturates, benzodiazepines, hydrocodone, and more.1

My MS-related medication raised a flag

With MS, I experience spasticity for which baclofen is not entirely sufficient at keeping it under control. So my doctor has prescribed diazepam (Valium) for spasticity. I take one each morning. This is what flagged my test results. The doctor whom I spoke with needed more information regarding the prescription, why I take it, and information about my local pharmacy.

I’m sure that all the necessary information was shared and that I finally passed the test. But I did want to mention this little detail because it’s one I didn’t anticipate. It also makes me think of other people living with MS or other painful conditions who might be using any of the other substances which are tested for prior to employment.

Starting the job

This part of the story hasn’t happened yet. I’m fortunate that this opportunity is remote and I can work from home. However, it is full-time and requires me to be at work during normal business hours. No longer will I be able to take my mother-in-law to her doctors’ appointments. Any other work I do will have to occur during the evenings or weekends. I hope that my energy levels will hold up from day-to-day. Wish me luck.

Be well,

As always, I love to read your stories. Has anybody gone back to work or taken a “real job” after years of being in charge of their own schedules and having tremendous flexibility? Please share in the comments.

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