In 1998, after several years of trial and error with a variety of medical treatments and some bizarre side-symptoms, I was finally diagnosed with Crohn’s Disease. Right away, I was told that the cause was unknown, it’s considered a chronic disease and there is no cure. I resisted the diagnosis – and the prognosis – and did not readily surrender to traditional treatment. Eventually, however, the same stubbornness helped me work with my illness, but only after I accepted it as a central, guiding aspect in my life.

I was in the hospital twice in 1992, the first time in July and the second time in October. By the time October had rolled around, I was a complete wreck. My body was weak, I had dropped ten pounds I couldn’t afford to lose, I was severely anemic and I was in a great deal of pain. Nonetheless, as soon as I could, I returned to my job in my dual role as store manager and regional training manager for a national bookstore chain.

joan-home-crohns-flareThat same summer I was asked to add the role of Acting District Manager to my list of responsibilities and I said “yes!” I did not yet know just how sick I was to become. As Acting District Manager I was required to periodically visit different stores throughout Southern California. On one such occasion I was so symptomatic that I had to run to the bathroom every 15 minutes. I was mortified. I remember resting my head on the steering wheel of the company van as I drove 60 miles to yet another store; I was exhausted but I kept going. I didn’t stop, I didn’t say no, I just kept going. I didn’t yet understand that caring for my body had to become my top priority.

Between dealing with my illness and juggling the three roles, my ability to keep up with my store manager duties was severely diminished. When a new District Manager was hired in early 1993 I was not only released from those duties, within a couple of months I was “relieved” of the training manager position, too. I was devastated. I quit the job I had loved so much just seven short months later.

For the next six years, I did my best to regain the same level of personal fulfillment that I experienced when I was a training store manager, while still learning to manage life with this illness. In those six years I moved through five different jobs, three of which were interrupted by short-term disability leaves lasting anywhere from two weeks to two months.

When I learned about coaching, a light bulb went off. This was something I could do! Plus, as the owner of my own company, I could set my own hours, make more money per hour worked, and I had full control over my working environment. These criteria remain as important today as they did 14 years ago when I started working for myself.

How I came to write about working from home

WWAD-coverThe tell-tale symptoms associated with my illness have been in remission for over nine years, since early 2005. In 2011, the day after I returned from a short trip to Lisbon, Portugal, I was hit with salmonella poisoning. The next five days resembled the very worst days of dealing with my illness. Once I recovered and I realized I’d made it through without a relapse into a full-blown Crohn’s flare, I was not only grateful, I was moved by what I’d had to deal with for so many years. I thought to myself, “This is my gift. This is what I have to share with others.”

I had already planned a trip to visit my son in New York and decided to add a day to the trip in case the publisher of my first book, “Women, Work, and Autoimmune Disease” (Demos Health, 2008, Joffe and Friedlander) was available to meet with me. She was! Sometime during the hour Noreen asked if I might have another book to write. At that time I was thinking a lot about “capacity” and I shared my perspective with her. Noreen was interested.

The title, Business from Bed, was actually conceived several years prior when I was still ill. I worked from bed when I had to and my coaching clients never knew. I even taught marketing teleconference classes in my p.j.’s, tucked under the covers and comfortably propped up with pillows when needed.

business-from-bed-coverThere are many conversations out there about how to succeed in business and there are just as many conversations about how to deal with and recover a difficult medical condition, but few conversations address the balancing act that tens of thousands of adults face each day: How the heck am I going to support myself (and/or my family) and do something that engages ME when my body is so unreliable?

In today’s technologically expansive world, there is no shortage of creative solutions for this particular balancing act. I find that a realistic attitude – this kind of sucks AND I’m open to seeing how I can make this all work – a good place to start. If you have a story to share about how you figured it out, or a question about an obstacle that you haven’t been able to resolve, please send them my way. I have plenty to share myself – and I will – but I find it much more interesting to engage with folks tackling these kinds of questions right here, right now.

 

Have a question for Joan about your career and chronic illness or rare disease? Leave a comment below to have it featured in an upcoming post!

Joan Friedlander

joan-friedlanderWhen Joan Friedlander’s career was derailed by Crohn’s Disease 22 years ago, she was forced to make significant changes in all aspects of her life: in her career direction, in her lifestyle choices, and in her view of herself. Joan coaches self-employed business owners who are having a difficult time balancing their drive to earn a good living with their very real need to establish healthy boundaries. She is the author of “Business from Bed: The 6-Step Comeback Plan to Get Yourself Working Again after a Health Crisis” (Demos Health, 2013) and co-author of “Women, Work, and Autoimmune Disease: Keep Working Girlfriend!” (Demos Health, 2008, Joffe and Friedlander) www.joanfriedlander.com

 

 

Order "Business From Bed" now.

Order “Business From Bed” now.

Order "Women, Work and Autoimmune Diseases" now.

Order “Women, Work and Autoimmune Diseases” now.

 

6 thoughts on “The Employment Plan | Joan Friedlander”

  1. Emma Rooney says:

    It’s great to get your expertise on getting creative with work environments. While your insights are especially valuable to the rare disease community, I think trying to find the right balance between health and work is a common challenge and many people can relate to your story in some way. It’s a good reminder for me that there is no “right way” to be a “productive citizen” but rather the importance of finding the way that makes the most sense for ones individual situation. I’m typically embarrassed to admit that I do my best work in my pajamas and so appreciated your honesty and affirmation that working from home doesn’t mean playing hooky but rather playing smart.

  2. Excited to watch this series unfold. Your book, “Business From Bed” is a great tool for patients who want to continue their careers post-diagnosis!

  3. Emma, I love that you do your best work in your pajamas. I get dressed these days but I have the choice and for me that matters a lot.

    I fully agree with you…trying to find the right balance between health and work is too common a challenge for everyone! I coach people who are well and people who have to contend with physical health limitations. The circumstances are different; the misconceptions about what it means to be a productive, worthwhile citizen are the same. I say it’s time we bust a few myths.

    From my perspective, we whose bodies have required we figure it out, have the potential to lead the way. Nice to meet a fella individualist.

  4. I think most effectively in “roll-up-my-sleeves” clothes. Not pajamas necessarily but sweats and a comfortable t-shirt.

  5. Amy says:

    Hi, Joan, I am actually, in tears, reading this article. I suffer from Ulcerative Colitis, Autoimmune Inner Ear disease, which causes vertigo flares, Interstitial Cystitis and a rare disease called peristomal pyoderma gangrenosum, which is basically the UC attacking my skin around my stoma. I now have a ilostomy. I have been pretty sick since my diagnosis in 2011, and in 2015 I became so sick, I spent a month in the hospital, lost 33 lbs, and they said part of my colon had died, or had become gangrene. I had emergency surgery to remove my colon, and had a permanent ileostomy. I had been working at a hospital since 2010, and trying to get into nursing school. I also am married and raising 4 boys. I basically spent 11 months of 2015 on prednisone, and due to my health and surgery I transferred to a desk job at the business office. I had to file a hardship at college in 2011 after first diagnosed. I was hospitalized 3 times in 8 months. I always thought I would go back to school but havent been able to. It’s 2016, and I thought surgery would end my misery with UC, but I was wrong. I was able to get off steroids in Dec. 2015, then in January, I had a mild flare of vertigo, and here I am May, and I have had multiple flares, of one thing after another. My supervisor has harrassed me and even wrote me up for missing work, even though I had dr. notes. I had my Dr.s put me on FMLA intermittent leave, to protect me for when i was sick, but she still harrasses me, in other ways, like why I havent done this or that. I am a hard worker, and I have highest accuracy rate in my dept. I guess I am going too much in detail… I am trying to find a new job, but it is so hard, and so stressful, I thought of working from home, I dont know how, and I thought of running my own business, I like making crafts and I thought I could sell them online or something. The thing is, I took a pay cut when I took my current job, and we have medical bills piling up, each time we get close to paying them off, I end up sick again and more bills come. I see 5 different specialists. I am tired, of all of it. I just want to find a job I can make enough money for my family and I want a boss who is understanding and supportive. I work in the health field, so it seems they are very compassionate with their patient’s but not with their employees. I am going to order your books, is there any advice you can give me, with dealing with my supervisor. I am never been disrespectful to her, I do my work, but it is not enough for her, she has it out for me. I just went to HR and reported her for harrassing me for being sick, but HR just said they would meet with my manager, who, as i have already spoke with her, and asked for a transfer, has not been helpful to me in any way. She doesn’t seem to want to be bothered. What can I do? I am and have accepted I will never be a nurse, I have let that dream go, I want to be a good Mother to my kids, with what little energy I have, but I need to work, financially, I cannot be stay home mom. thank you for your help and for addressing this issue for all of us.

  6. Dearest Amy, I’m sorry it’s taken me a couple of days to reply to your heart-felt post about today’s reality in your world. I am in the middle of a move and it’s consumed my available time for the past week or so!

    I hear your frustration, and understand your plight. It’s so hard to be sick and to have major body processes go awry. I’m really sorry to hear about your work situation. It sounds like your manager “wants” to rely on you and can’t, and is not doing well communicating with you. I’m going to share my view on this, having been fired and demoted due to my health issues . You can’t change someone who isn’t sympathetic or understanding. And, if you don’t have an ally in the company (co-worker, manager and/or HR) it can be really difficult to manage your health AND do your job.

    The hardest part? Letting something go that feels like security, yet is actually unhealthy. It sounds like you might be in one of those situations. I’m not suggesting that you DO anything, but when you’re ill, guess what comes first. Your well being. If you get a copy of Business from Bed, consider spending a little time with step 1. In it I ask you to look closely at what you might be hanging onto that no longer serves you. It can be tough, but also freeing. Then in step 2, treat yourself to reconnecting with YOUR values. Illness has a way of showing you what is important. In step 4, Asking for Help, I talked about communicating at work, and you could use step 3 to consider other employment options. In the first book, my co-author, Rosalind, wrote some great sections on how you might approach difficult work conversations.

    Thank you for taking time to share your story. You’re not alone! If you ever want to contact me directly, you can through my website, http://www.businessfrombed.com/contact/
    Wishing you well,
    Joan

Comments are closed.

X