Joan’s Column on RAREDaily

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Global Genes is a leading rare disease patient advocacy organization. RARE Daily is reader-friendly, online news magazine and source for the latest information in the rare disease community–offering multiple channels of information on everything from innovations in research, policy, clinical trials and first-hand stories from patients, clinicians and other rare disease stakeholders.

The Employment Plan

Business from Bed is all about how to get back to work after a health crisis. When I first started my guest column with Global Genes’ RARE Daily, we thought it best to talk about career issues. It’s an important conversation for millions of people, and one that is not well-addressed in business environment. We must champion our own cause!

joan-home-crohns-flareMy Story with Crohn’s Disease, and why Business from Bed

The 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.” Read more …

 

Business from Bed by Joan FriedlanderYou Are Not Alone

Illness, typically considered a sign of weakness, is a taboo subject in the business environment. Business owners keep their conditions hidden so that their customers keeps their attention where it should be anyway, on the value and quality of the business service or products. Employees throughout the ranks keep their health issues hidden, fearing loss of employment. Yet, illness is a part of life, not just for a select few, but for millions of people around the world. Business from Bed is, among other things, a book meant to normalize an aspect of life that many determined professional men and women endure in isolation and silence. Read more …

 

signsWhere Do You Start?

Meet Cass. Cass is one in a million, yet representative of so many people struggling to put their career back together after a serious medical setback. Her life has been completely overturned by not one, but 2 challenging medical issues. They affect both her mobility and her speech, not all the time, but enough to make life difficult. Furthermore, she and her husband recently moved to a somewhat rural area in Virginia, she’s on Long Term Disability and after 18 months of being ill and out of work, she feels completely isolated.

Her stated desire: To be economically less vulnerable, to feel less isolated, and to do something useful and satisfying. Read more …

 

tough decisions aheadCan You, Should You, Dare You?

Once the acute phase of a chronic illness passes and you have some sense of stability, the desire or need to get back to work usually arises with it. It’s easier to return if your leave has been relatively short, but what if it’s been a year, two years or longer? What are your options? Do you dare try?

Read more…

 

Adapting to Limitations

We revised the name of my column in mid 2015 after I realized that “The Employment Plan” was not the right context for the entire scope of my writing. Adapting to Limitations is the name of the game when your body is on the fritz. This is where the human spirit excels, and it is this spirit I want to celebrate.

wrist-wrap1A Broken Wrist Demands Adaptation

In January’s post, “Can You, Should You, Dare You?” I wrote about how much mental and physical energy it takes to heal a body that has been compromised by disease for a number of years. I received a direct reminder of that truth when I slipped on an ice patch in February, which landed me with full force on my right wrist, resulting in a fracture that required surgery.

It is now several months since surgery. It was three months before I could reasonably write with my right hand (of course I’m right handed) and use it to carry out most of the tasks of living again. It is not completely healed and in the evening it sometimes reminds me, “we’re not done yet.” But, those first few weeks? Exhausting. Read more …

 

holiday-stress_webSelf-Care and Family During the Holidays

Meet “Julia,” a university professor who suffers from chronic pancreatitis. She is often in pain and certain foods aggravate her condition. Last time she and I had a coaching session, she was out on long-term disability, having surrendered to her need to put her personal welfare ahead of her career. On the personal side of life, Julia is married and enjoys spending time with her husband, but family get-togethers are stressful for her. And because she lives geographically close to her siblings, their children and her parents, they expect her to be there and to participate in the festivities. Read more?

 

scalesAsking for Help, Who’s Keeping Score?

Ah yes, asking for help, step 4 in “Business from Bed.”  You’d think I would have it down by now, but I don’t. Once again, life had to show me the way.

For the last couple of years I have been the “helper” in one of my business alliances, delighted to be well enough to need very little of it myself. When I say helper, I am not only referring to my business role, but on a personal level too. I’ve been the marketing/organizational person, and also a helpmate, as my business partner experiences frequent periods of low energy. Honestly, I am more comfortable when I am the person helping than when I’m the person receiving. Something in me feels a strong need to maintain balance in some imaginary scale of give and take. Read more …

 

Empty asphalt road towards cloud and signs symbolizing success aForget Goals, Try a Theme Approach

This is the time of year that inspires people in the modern world to wipe the slate clean and set new goals for the coming year, hopeful that “this will be the year they finally (fill in the blank).”

If it’s been what we deem a good year, we set goals to get to the next level. If it’s been a crummy year, we set goals with an aim to have a better year. Having done the same myself, I understand this drive. However, I’m not sure it’s a healthy one. Simply put, most people set goals (specific, measurable outcomes) under the operating assumption that life will flow as planned, with no accounting for contingencies. Read more …

 

When Illness Messes with your Promises

Correctly, or not, our trust in and our reliance on others – and ourselves – is built on promises. It’s deemed “good” to do what you said you would when you said you would do it, and bad when you don’t. This training starts early on in life, long before you’re fully developed, and it goes in deep. So what happens when illness – yours or the others you care for – makes it difficult to promise or commit to anything, especially things you really care about? In my experience, this is one of the more socially stressful aspects of living with active disease.

Natalia, who suffered for years with severe endometriosis, and continues to deal with immune sensitivities, summarized the dilemma perfectly:

“To plan activities or not? I feel so awful when I have to cancel. Read more…

 

coffee-energy-flowGet to Know Your Energy Flow

No doubt you’ve heard the terms “morning person” and “night owl.” They are terms used to describe the innate rhythms on two ends of a natural energy spectrum. When people are able to engage in everyday activities in alignment with their unique body preferences, the morning person and night owl are more likely to thrive. It makes sense, doesn’t it? Going with your flow creates less resistance – physical, emotional and mental – than pushing against it.

What happens when you throw an unpredictable variable into the mix, in our case, the variable called illness? Is it possible to identify what I refer to as your “Unique Energy Pattern” (UEP)? Based on my own experiences living with active Crohn’s Disease, and my work with a number of people managing their day around unpredictable variables, it is. Read more …

 

work-day-or-disease-dayDisease Day or Work Day?

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.” Read more…

 

skills-imageShould Work be Easy when You Live with a Chronic Illness?

No matter your age or your life’s circumstances, the question about how to earn a good living doing work you enjoy is an important one. After all, we live in a world where health and well-being depend on it. Some people work for money, some for the joy of the work itself, and others because they’re called to a mission that won’t let go. As you contemplate success on this material plane, why not include capacity and EASE? Because whatever job you are doing, you should be able to do it – or at least the important tasks – even on your worst day (from your toilet, hospital bed, on heavy medication, etc.) Read more…

 

fish-bowlsDoes Your Environment Nourish or Deplete?

A lot of people live and work in environments that aren’t healthy for them, and they will put up with a lot in exchange for something they believe to be more important, or just not worth fussing about. Many don’t even think about it until something wakes them up enough to notice that something is amiss.

Illness is one of those “circumstances” that make it much harder to tolerate what you might normally put up with in order to get along. If you’re anything like me, symptom flares increase your sensitivity to just about everything: temperature, noise, light, smell and even taste. Some of these things can’t be easily managed but many of them can. I want to talk about what can be managed.

My experience says that if you can adjust the outside environment to one that helps create ease in an agitated body, the ability to relax in between surges of pain supports the healing process. Read more…

 

Is your Doctor “The One?”

Over the course of the 24 years I’ve been navigating this journey through my disease, I’ve been treated by 9 gastroenterologists. I’ve been treated by the best, the so-so and the scary. The best took a collaborative approach – he is the doctor I was working with when the symptoms went into remission. The worst are overbearing and unyielding, prioritizing statistics and rigid prescriptions for disease management in order to stick to the norm, even if it might not be right for your body.

Admittedly, I’m an idealist. I would like to think that it is possible to find medical professionals who are excellent scientists and technicians in their specialty, yet open enough to entertain complementary or adjusted approaches to disease management and recovery. I continue to be shocked when I meet a new gastro who can’t seem to entertain the possibility that the currently prescribed protocol is actually working. Read more…

 

Making the Big Decisions Easy

Are you at a point where you feel like you’re ready to step up your engagement in the world, yet concerned that if you do you’ll risk your health? You’re not alone. I, and everyone I interviewed for “Business from Bed”  had the same concern. On one hand, it’s exciting to feel the return of energy. It’s also normal to wonder if you will find yourself in another flare-up if you overextend yourself once again.

I’d like to introduce you to SWOT, an evaluation tool commonly used in business to take a snapshot of current conditions in order to develop intelligent strategies for moving forward. Used in a personal context, SWOT can be used to clear the emotional and mental clutter that can distort perception, and to reveal priorities as well as new opportunities. Read more…

 

3 Illuminating Career Questions for Young Adults Living with Rare Disease

I recently participated in a panel discussion at the CureDuchenne Family Summit in California. We talked about the opportunities and issues associated with navigating the transition from being a dependent teen at home, to considering college and future career options. I was specifically asked what I might advise young men who are starting to look beyond school to setting initial career goals. Even without the additional factors that come with complex illnesses, setting initial career goals is no simple task.

To help you get started, I offer 3 big-picture questions to contemplate as you think about work options. They are Why, Who and What? Read more…

 

A New Year’s Resolution for Rare Disease Patients
(Take charge of your Life with a Wellness Plan)

When people first hire me to coach them, before we do anything, we establish intended outcomes for our working relationship. It’s important to the coaching dynamic, and it gives us a reference point for the coaching engagement. Typically, I work with clients to establish twelve month plans that include both business and personal objectives. When someone is severely ill however, and work isn’t part of the current equation, the entire focus is on restoring their self-esteem, and creating practical plans for improving physical strength and emotional stability. This way we develop a set of foundational practices that can continue to support them when they’re ready to go back to work.

Since this is the time of year when people take stock, I wanted to share with you the “Wellness Plan” one client created when she was out on long-term disability. Her sole focus was the restoration of her physical and emotional health. She resolved to be an increasingly active participant in her life. Read more…

 

What to Tell People about your Rare Disease, or Not

In a previous post, When Illness Messes with Your Promises, I briefly touched on the issue of communicating with people about your illness. Some rare diseases present obvious symptoms, making it more likely you’ll be asked about your condition. Others are “invisible” because the symptoms don’t manifest on the outside, making it potentially easier to be more discerning about who you tell. Either way, there will be times when it is both responsible and necessary to talk about how your disease impacts you, most notably with employers or professors, with new friends or with a new love interest.

It is hard to talk about something that you’d rather not, especially if you’re feeling unsure about how people will react, or simply prefer not to be identified with your illness. Read more …

 

My Recent Adventures with Insurance and Remicade

I’ve been receiving Remicade infusions for treatment of Crohn’s Disease for over 10 years now. Until a year ago, I never had any issues with authorization and coverage, so when I received the first insurance denial I was shocked, especially since I had the authorization for the infusion at this facility in my possession. To compound things, I didn’t receive the denial until I had already received another infusion a couple of days prior. Now I was looking at double the potential liability! Read more …