Adapting to Limitations: Disease Day or Work Day?

by Joan Friedlander

Shortly after receiving her diagnosis of Young Onset Parkinson’s Disease (YOPD), Norene got a hold of a copy of Business from Bed and decided to contact me. YOPD is a neurodegenerative disease, characterized as a form of the illness that first flares between the ages of 21 and 40. She was determined to figure out how she could work between flares, which, due to tremors, made it difficult to perform normal work functions at will. A few months later she got back in touch with me and agreed to an interview. She was about to launch an online business serving other women working around an illness.

I was most struck by Norene’s realization that she had divided her life into 2 categories, “work days” and “disease days,” and delighted to learn that Business from Bed encouraged her to partner with her disease instead of fight it. It hasn’t been easy, but once she clarified her intention, she was on her way. I hope her story will inspire you in your own journey.

Getting the Diagnosis

Norene first noticed a change in her body in 2006 when working at a business resource center. It started with twitching in her hand and pain in her wrists and her joints, and deteriorated from there. In 2012 she was finally diagnosed with Young Onset Parkinson’s Disease, which was further complicated by an inoperable benign brain tumor.

I was able to pick her brain on some of the more difficult challenges she faced.

Q: What was the most significant impact on your business/career/life?

A: The most significant impact on my career was the inability to maintain my traditional 9-5 job. The most significant way it impacts me now is not being able to produce or perform work functions at will. I have difficulty typing & writing and it is almost impossible to sit for extended periods of time or find a comfortable position to work in.

Q: What’s been your biggest frustration? 

A: My biggest frustration is that my brain is functioning at the same fast pace it has always functioned, but my body is not physically able to keep up with this pace. Not being able to perform at will has been a big frustration!

Q:What’s been “the gift” of your illness?
A:

1) It helped me get clarity on and prioritize my personal relationships.
2) It gave me the determination to live my life to the fullest and take the time to enjoy the things life has to offer.
3) It presented the opportunity for me to start my own home-based business, which I’ve always wanted to do.

Q: How did Business from Bed support you in your process?
A: It helped me to make an agreement with my disease. Before, we were working against each other. I don’t remember where I was in the book but once we “agreed to work together” things changed.

Q: Can you give me an example?
A: I’m partnering with the disease now. Before, I tried to keep that separate. I only wanted to do business on days I felt good. It was either a “work day” or a “disease day.” When I’d wake up and was having a bad day, the disease would “win” that day. I’d pull the covers over my head and [that would be it.]

Since “we” made the agreement, instead of handing the day over to the disease, I asked what we can do. Can we do X and Y? Can we do A, B and C, will you allow me to accomplish that today?

Q: How does your business support YOU?

A: It gives me a focus, a purpose. There were times when I felt I’d taken on too much and put it aside. And after a few days [of doing nothing], I wondered what I’m here for! I really need this business.

Norene is still frustrated by her limitations, but by making an agreement with her disease, accepting it as an aspect of her life – not her whole life – she’s finding ways to work with it. This is the best any of us can do. Since hers is a progressive illness, it is likely she’ll have to periodically readjust and update this “agreement.” Rock on Norene!

About the Author | Joan Friedlander is the author of “Business from Bed” and co-author of “Women, Work, and Autoimmune Disease.” Joan is an expert in working and living with chronic or serious illness. Through her books and coaching, she helps career-oriented individuals realign their business activities in the wake of a serious health setback. For more tips from Joan, visit www.businessfrombed.com.