A former client sent me a Holiday e-card with a note that she’d lost her job and with it, her family’s health insurance. In follow up emails she told me that she was part of a lay off last month, she’s been feeling sicker since she’s left work and feels lost. She wants to work with me again and thinks it would help as it did before.
But she won’t do anything that would cost money or wear her down even more physically. She’s too afraid to look for a job.
Because she’s been reading my posts for years, she suggested I write about her story.
By her own admission, she’s swimming in guilt about what her job loss is doing to her family. Especially since she’d been out of work for 3 years grappling with a debilitating pain condition. She wrote, “ I’m a burden on my husband and kids. I desperately want to find another job but I can’t bring myself to do anything about it. I’m afraid to fail.”
I get it. I know healthy people who feel this way when they lose a job. But for so many reasons, the ’guilt’ from losing a job is a particularly heavy load to carry when compounded with debilitating illness.
It’s not always true that doing something is better than doing nothing. But how can do nothing help here? And just wanting isn’t enough even if it’s easy: “I want a job”. Setting intention is harder: “I’m going to try to make this happen“. Taking action is risky and brave: ”I’m going to commit my resources, time, money and energy to do what I can to make this happen.”
You might ask yourself this: When I think about what I’m going to do with my resources, my energy and myself, am I making decisions with confidence and clarity or am I making decisions from a place of fear ?
How is that going for you?
When I woke in the middle of the night for the 3rd time to go to the bathroom (incontinence again!), I found myself muttering. Of course, the middle of the night is the worst time to think about anything, and I was panicking about what wouldn’t get done today. One thing I’m good at is capitalizing on what happens to me and using it in my work. Hence, today’s post.
It’s a new year and you’ve probably made plenty of useless resolutions. Why not think about this?
What can you do to GET RID OF THE SHOULD and FOCUS ON THE CAN DO? I ask you, what can be more important than this when you live with unpredictable health?
It doesn’t matter whether you’re self-employed, employed by other or unemployed. Setting expectations that you can meet is critical to creating satisfaction — your own and others.
Let’s look at my own recent experience. Two weeks ago, I’d planned to write ablog post before I started my week vacation. When t time was running out and my ‘to do’ list was still pretty hefty, I ditched whatever wasn’t a ‘must do’. I went into vacation feeling good about taking the time off. Yup. You could say that I felt satisfied with myself.
On my return, I was determined to get the blog post done because it’s my policy that no more than two weeks pass between posts. But other work had piled up and my health took a nose dive (not major but annoying and time consuming).
Which is why I went to bed last night very tired from my recent health issues and frustrated, angry and feeling sorry for myself about the things that weren’t getting done. I desperately needed an ‘expectation re set.’
Whether you’re dealing with your boss, colleagues, those you supervise, clients or your self. You fall into a black hole focusing on what you can not do rather than figuring out what you are able to do right now.
I developed an exercise called The Pulse for my clients and I’ve described it in detail in my Workbook, Keep Working with Chronic Illness. The Pulse is designed to help you stop with your stories, the blame, etc., and put your energy on what’s going on.
How are you doing with setting expectations that you can meet? Are you willing to do a re-set when it’s necessary? It’s not easy but can you plan for what it will take to do this?
OK. I’m moving on in my ‘to do’ list. How’s today going for you?
I got an email pointing out that I don’t have pain resources on my website. This person said she wanted to hire me to coach her in finding work. But, she wrote, I obviously don’t know anything about living with pain since it’s missing from my site.
She’s right that there’s not enough on my website or my blog about my work with people with chronic pain conditions. Nor do I have enough good resources.
The truth is that I’m immersed in several projects relating to people living with chronic pain conditions and have come across terrific resources. But I haven’t posted this even though I know that I should. As an entrepreneur whose livelihood springs from web-based marketing, I’m doing an inadequate job of promoting my business. And this critical to getting new clients.
I know this and, although I’m not happy about it, it’s a decision made with intention. I choose not to make the time because I’ve set my priorities. And right now, this isn’t at the top of the list.
How about you? How many tasks are waiting to get done and slide further down the ‘to do” list? Yikes, it’s especially true when holiday mode is in full gear. That list grows so many pages I lose count and my energy saps just looking at it.
Do you beat yourself up, even just a little, when you think of what you haven’t done? It’s so easy to do that but what a waste of time and your limited energy!
Yes, healthy people struggle with their ‘to do’ list also. But living with chronic health challenges makes it that much harder to get through the list. There’s not much you can do anything about the fact that you’re never sure if you’ll wake up feeling worse or better than when you went to sleep. This often means that you can’t be sure what you’ll be able to get done on a given day. That’s when you’ve got to reach into your inner tool box for what you can do.
Do you keep this tool handy? “I can take charge of the way I look at this!”
As you think about what you have to do, ask yourself: What’s going to help me get through just this day? What is most important to you– meeting the project deadline or going out with friends to celebrate the season? Do you have to write that last memo knowing that you won’t have time to exercise or food shop? What will you have to ‘give up’ if you go to one more store to buy those gifts?
Whatever you choose, choose with intention, so you feel in your gut that you’re making the choice.
We all make mistakes. We all act without thought. At the end of the day, forgiveness is powerful. Especially when the person you forgive is you.
How’s it going for you?
One person’s story
The following interview is with Sophie Lee who has published a book about her life with Irritable Bowel Syndrome, IBS. I find her story compelling. Does it resonate with you?
Q: What made you write this book?
A: More than anything, I just wanted to tell the truth about IBS. There are so many myths about IBS: that it only causes diarrhea, that it’s not very painful, that it’s a mild inconvenience, that it’s a psychological problem, that it’s caused by stress…I could go on. It’s such a misunderstood problem, and sufferers themselves are often too embarrassed to talk about their symptoms openly. Luckily for me, I think the embarrassment wears off once you’ve had IBS for a few decades!
I wanted to write about what it’s really like to have IBS: how it affects every single aspect of your life, how bad the pain can be, how difficult it can be to travel or to work. But I also wanted to offer some hope, because my IBS has been much better over the past few years due to a diet and supplement regimen that works for me.
I was also disappointed at the range of IBS books currently available. The vast majority of IBS books are written by doctors, and some of them are excellent, but it’s not the same as having someone say, “I know how you feel, because I’ve been there.”
Q: What do you think is the hardest part of living with invisible chronic illness while you are growing up and developing who you are?
A: One of the most difficult things for me was the way that the illness made other people see me. When you turn down every travel invitation, every weekend away, when you can’t drink alcohol and can’t eat at certain places, when you cancel plans at the last minute or seem miserable and tired when you do turn up, then people begin to see those things as part of your personality rather than part of your illness. If that’s how you always behave, then that must be who you are.
I still struggle with this sometimes, and I want to scream “It’s my IBS that’s making me this way, it’s not my fault!” But things are better now that my friends and family understand more about the limitations of IBS and how it affects me, and I hope that people no longer think that I’m naturally grumpy and dull!
Q: At what point did you start thinking about how living with illness should impact your career/work direction?
A: I went through a terrible time in my first ever full-time job when I was in so much pain so often I thought I was going to have to quit and go back to live with my parents. I managed to struggle on with the job, but I hated the travel I had to do for work because it would always mess up my intestines.
My second job was a little better as there was no travel involved, but my ultimate goal was to find a way to work from home. I knew that even if I could just about cope with office life I was never going to be happy there – too much anxiety about access to a toilet, too many afternoons spent in pain. If I could work from home then I would have my very own toilet and much more control over my hours. I was very lucky to find a way to work from home over the internet, and this has made my life so much easier.
Q: Do you have any suggestions for others about what they should think about in doing this?
A: To be honest I realize how lucky I am in being able to work from home; not everyone has this option open to them. But I think the most obvious mistake I made, looking back, was to be so secretive about my illness at work. I tried to keep the entire IBS situation to myself, when I would have been much better off being honest about it and asking for help if needed. I suspect, for example, that I would have been allowed to stop traveling entirely for my first job if I had just explained why, but I couldn’t bring myself to do it. I should have been honest and trusted my employers to help me rather than hiding away in fear.
Q: Is there anything else you want to share here?
A: I’d like to say to anyone with a chronic illness that I hope you are feeling well today, and that you find the strength you need to cope with whatever life throws at you, be it your symptoms, your doctors, or those pesky healthy people who like to give us so much advice!
Sophie Lee’s book, Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, is available — http://www.ibstales.com/sophies-story.htm
You can also follow her on Twitter: http://www.twitter.com/ibstales
Do you think you can?
The difference between a successful person and others is not a lack of strength, not a lack of knowledge, but rather a lack of will.
Vince Lombardi
Motivation and will power fascinate me. Maybe because I didn’t have much of either when I was young and then they each blossomed.
Illness in my late 20′s was transformational for me. My gut response to devastating disease shaped how I responded to events from that time on. From that dark place — in which I saw parts of me I didn’t know existed – I was able to create intention. It was an easy route to find motivation, direction and will power I didn’t know I had.
Webster’ s defines motivation as ‘incentive or drive’ . It defines willpower as energetic determination. In a recent The Boston Globe article, Goal Oriented, Deborah Kotz explored new research on willpower.
“The reason for all this interest? Willpower, it turns out, is one of the most important predictors of success in life.”
Among other things, the article notes that research shows that those who scored highest on self control at age 3 were far more likely to be healthy and financially successful adults. No way would I have scored high on self control at age 3 — or even 15 (not I who always read the end first and snatched the frosting from the all cupcakes in spite of my brother’s wrath!). It wasn’t until I was in my 20′s that any hint of who I would become started to emerge.
But I don’t think I’m typical. I’ve noticed in my coaching practice that those with a track record of success do better at marshaling the motivation and willpower they need to face the challenges of chronic illness. Even if resilience and hope falters, they’ve already developed the muscle memory.
So, what’s it been like for you? Do you “hide under the covers” and collapse when the going gets tough? Or is there some part of you, some voice, that always pulls you up to face the day?
How do you face tough times, difficult situations, your unhealthy body? Do you think you always had the tools to ‘push through’?
FYI – The header comes from this quote: They can because they think they can. Virgil
QUERY: HR Directors – We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness. Employees who participate would receive coaching services at no fee. We ask nothing from a partner organization other than to communicate our message about this study to their employees. Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us? For more information: Alyssa.McGonagle@Wayne.edu
What does it take for a person with chronic illness to continue working ? And, if possible, to do so in a rewarding way? I’ve wrestled with this personally for over 30 years, and more recently in my professional life as a coach/writer/activist of sorts in the past 10 years.
A recent New York Times article profiled a self-described “high powered executive” with schizo affective disorder . Against all odds, she discovered for herself that the best medicine for her is an intense work environment. The very idea defied what everyone around her believed.
The article cites recent research on a small group of high achievers living with this diagnosis. ‘“It’s just embarrassing,” said Dr. Stephen R. Marder, director of the psychosis section at U.C.L.A.’s Semel Institute for Neuroscience and Human Behavior. “For years, we as psychiatrists have been telling people with a diagnosis what to expect; we’ve been telling them who they are, how to change their lives — and it was bad information” for many people.
Sound familiar? So what can the rest of us learn from this?
1. There’s much to learn from others living with a chronic health condition. Don’t be fooled by a diagnosis. In my coaching practice, working with more than 300 people living with all forms of chronic illness, I’ve found that most disease symptoms bring on some debilitating level of fatigue or pain. And it’s these defining experiences that hurt performance. Isn’t that what matters?
(If only researchers shared more of their findings among different disease and branches of medicine, science would move much more quickly to finding sources and cures of disease. )
3. You are responsible for figuring out what you can and cannot do, what is ‘good for you’ to do and what harms you. Yes, that’s hard. When your healthcare practitioner (your psychiatrist, surgeon or acupuncturist, you name it) tells you what you ‘need’ to do to ‘take care of yourself’, you should listen and try it. But as you test this out keep an open mind to question if this is right for you.
3. Stress comes in many forms and each of us has to figure out what it means . We all have different tolerance levels for stress. It affects people differently and it can affect each of us differently at different times. Let’s say you believe that your job makes your health worse because it’s ‘stressful’. Ask yourself:
- Does this mean that all work is “stressful” for you?
- Are you working in a high stress environment (everyone finds it to be so) or is this your unique response to the stress that exists there?
- Is there another way to look at the ‘stress’ so it doesn’t feel harmful?
Bottom line? Life is a teaching opportunity. What are you learning from it?
The following is a guest blog by Erica Moss.
Sites like Twitter, Facebook and LinkedIn can land you a job if used correctly — or ruin your chances if mishandled. The good news for those living with chronic illness is that these social networks make it easier than ever before to build a personal brand, and establish and grow your network from your computer or mobile device.
The first step to leveraging these tools is to get acquainted with each one and establish your network. LinkedIn has positioned itself as the professional’s social network and should be your primary focus when looking for a job. Set up a LinkedIn profile, add your work history, current position and connect with your colleagues by uploading your email contact list. Research the companies you are interested in; some may already be advertising positions on LinkedIn. If not, look for someone within your network who is connected to the company in some way and politely follow up with them. Also consider joining alumni, professional and interest groups to expand your network and your access to jobs, as people frequently post listings on group discussion boards.
While creating your profile, keep in mind that potential employers will likely peruse it. For those with chronic illness, a question often raised is whether or not to keep your illness private. Depending on your situation, you may decide to keep this private or you may list it if you are looking for a position that is in some way related. You should ask yourself if your illness has any impact on the jobs you are looking for. If not, why include it? This is also important to remember when joining support groups through LinkedIn and Facebook as these groups will appear on your profile.
Facebook is not as obvious of a resource for job hunting as LinkedIn, but it can also be a rich avenue. There are number of tools which leverage your existing Facebook social network to connect you with jobs. IntheDoor.com is a site that compares your network on Facebook with current job listings to see how you can best leverage your contacts to gain access to those positions. A similar site, BranchOut.com, allows you to make your Facebook profile more professional and search a database of more than 3 million job listings.
Twitter can also be useful for establishing a personal brand, expanding your network and engaging with others in your industry. Fill out your profile completely and find people to follow, like colleagues, journalists and influencers in your field. Tweeting your thoughts on issues relevant to your professional interests and links to worthwhile articles is a good way to establish your presence on Twitter. Again, whether or not you choose to comment on your illness is up to you, but remember that unless you protect your tweets, anyone can read them. You can also find jobs on Twitter by searching hashtags like #jobsearch or #salesjobs, and by following the Twitter feeds of companies you would like to work for.
Using these tools in combination with one another will maximize your chances of success. Finding a job always takes effort, patience and perseverance. Social media will not eliminate these necessities, but it can make the search easier and broader for those living with chronic illness.
Erica Moss is the social media outreach coordinator for the online Masters in Nursing program at Georgetown University, which has one of the nation’s leading nurse practitioner programs. She’s used her Twitter presence to help land a job, and outside of work, Erica is an avid dog lover who loves photography and meeting new people.
QUERY for HR Directors: We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness. Employees who participate would receive coaching services at no fee. We ask nothing from a partner organization other than to communicate our message about this study to their employees. Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us? For more information: Alyssa.McGonagle@Wayne.edu
Several recent emails have either asked for my ‘advice’ on a topic or angered with the ‘advice’ I’d given. Funny thing is — I don’t see myself in the business of giving advice, either as a blogger/writer or in my coaching practice.
So what’s this about? I asked myself, what does it mean ‘to give advice’?
- My definition: telling a person what to do.
- An online definition: advice, n., recommendation regarding a decision or course of conduct.
I could see how what I think are ‘suggestions’ could be perceived by others as advice. I think there’s a distinction here worth making. My intention with these posts is to encourage you to think about a challenging situation differently. And, in doing so, to be better able to improve it.
Think about this: Have you experienced loss? Do you fear more of the same? You can do something about this but advice, recommendations, won’t turn it around. Let’s face it, when living with chronic illness, there are no ‘right/wrong’ moves. Too many variables and unknowns. Life is too complicated for simple solutions.
Do you consider the suggestions I offer, play with them, roll them around in your mind? If not, why not? If you’re stuck doing this yourself, find someone — a friend, a coach — to help you work it through.
For instance, when I explore disclosure, I suggest describing how symptoms impact you, rather than talk about how they feel. That’s just one option. Play with it, twist it around and see how it goes for you.
Another example is working or not working. This can be a biggie for most of us. I recognize that it’s not always desirable nor even possible to work when you live with illness. I’ve written in my book and in these posts that research and my personal/professional experiences support the idea that work improves a person’s health.
But there are many exceptions to this statement. Only you can figure out where you fit within this spectrum.
My intention and hope is to write something that motivates you to take a closer look at your situation through a different lens. The stories I create are culled mostly from my clients, and I use them as examples. These short posts aren’t prescriptive. They can’t possibly address everyone’s situation. I create stories, culled mostly from my clients, and I use them as examples.
Go ahead! Adapt them to work for you. Seek help from others when you’re stuck.
If you don’t agree with an idea, share it here. Tell me and others what you think, what works for you. Share how you live – and work - with the challenges of chronic illness.
QUERY: HR Directors -We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness. Employees who participate would receive coaching services at no fee. We ask nothing from a partner organization other than to communicate our message about this study to their employees. Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us? For more information: Alyssa.McGonagle@Wayne.edu
Talking about chronic illness?
Living with chronic illness means that life’s challenges become … even more challenging.
After more than 10 years of coaching people around living with illness and their work life, blogging on this topic, and in my personal experience, I’ve decided that the basics matter. The basics allow a person to thrive, not just survive.
Here are my top 3 thriving skills:
- Communication
- Communication
- Communication
Yup. It’s that important.
Let’s look at why.
First, most illness symptoms are invisible. No one knows what your symptom/health is today/ in this moment– unless you tell them. And even where some of effects are visible, that doesn’t mean that others understand how this impacts YOU, unless you tell them.
Further, even if your boss or best friend lives with a chronic illness, it doesn’t mean she’s experiencing the same symptoms or having the same disease progression. Even more importantly, pain and fatigue (2 primary chronic disease symptoms) are subjective experiences. What does it mean to rate it on a scale of 1-10? Nothing other than to define how you experience it at this moment in time. That means your herniated disc or ulcerative colitis symptoms impact you in a certain way. Often it impacts you differently day to day. Another person with the same clinical findings on an MRI or a Colonoscopy will likely have a very different response and experience of this from your own. That puts the burden on you to describe what’s going on to others – if you choose to.
Finally, although almost 50% of the adult population live with at least one chronic disease (astounding isn’t it?), having good health is greatly prized. Even more importantly, acting like you have good health is prized even more! Too often that means that although people might be empathic when you get a diagnosis, the empathy quickly wears thin if you can’t pull your weight or if you’re asking others to do things differently for you.
Here’s a specific example of how talking about this can be such a problem that it truly gets in your way.
In a recent conversation, my client was reflecting on what led him to stop working. Five years ago, he left his job and went on disability. He’d been able to continue working for over 10 years with increasingly debilitating symptoms (he lives with Crohn’s disease). But he’d often had to do a ‘work-around’ – - do his job differently or at a different pace.
Now he finds that he needs more income than he’s getting from his disability policy and he’s sorely missing working. His doctor suggested he seems depressed. And his wife told him he has to find something to do. He’s 52 years old.
Thinking back to his decision to leave his job, he realized that it wasn’t the illness or symptoms. He was fed up trying to ‘defend’ himself to colleagues and bosses – he hated having to talk about it so much.
When we explored the conversations that bothered him at his last job and looked at how it’s not all that different in his personal life, he saw how isolated he’d become since this disease had grown worse.
The interpersonal habits he’d learned over a lifetime had worked well enough and he’d felt successful in all the key areas of his life. But illness required different things of him and he wasn’t prepared.
“I’m a man of few words,” he said when he described himself. So how’s that going for you, I asked?
Are you struggling with one of the top 3 I mentioned above? Here are some suggestions.
In my book, Women Work and Autoimmune Disease: Keep Working Girlfriend, there’s a chapter, “Talking About Your Chronic Illness”. It identifies some specific tactics you can apply to your own situation.
My booklet, “Are You Talking” , part of the Career Thrive Series, goes into even more detail about how to tackle this issue in your work life.
Finally, I often use another resource in my coaching work , “You Are What You Say” by Matthew Budd and Larry Rothstein — particularly the chapter on linguistic viruses.
Hmm, I seem to think in 3′s, don’t I? What’s that about?
Do you have any suggestions for other resources? I ‘d like to hear what you’ve found useful and I know readers would welcome them, too.
The following is a Guest Blog from Allison Gamble.
The health benefits of yoga have been well documented for years and known for centuries in some cultures. Recent research suggests that people with chronic illnesses may benefit from yoga. Of the many different forms of yoga, some are more beneficial for certain conditions than others. It doesn’t take a psychology degree to see that the meditative benefits of yoga open the doors to a more positive outlook on life, but some of the physical elements of the exercise inspire more investigation. It may take some time to discover which one works best, but most doctors agree that yoga is a great option for those dealing with chronic issues to relax and help mentally ease the pain of their conditions.
Yoga and Chronic Conditions
Patients with chronic conditions ranging from cancer to persistent back pain are turning to yoga classes in increasing numbers. Chronic conditions can cause patients considerable stress or fatigue. This may inhibit the effectiveness of treatments and result in additional discomfort. Many doctors and health care professionals recommend yoga for exercise, meditation, relaxation, and relief of stress. Yoga basics are easy to learn and can be easily incorporated into a busy life.
Bringing Yoga to Work
Yoga can help with mental health, mitigate treatment side effects, and improve how the body handles pain and stress. All of this certainly applies at work. Chronic conditions, especially back or muscle-related pain, can make a day at the office uncomfortable and stressful. Many people think they don’t have time for yoga, that classes are too expensive, or that they’ll be too tired from work to practice. However, yoga can easily fit into your busy schedule.
Most techniques can be learned quickly and practiced for a short period before or after work or on a break. Classes can also be taken on weekends, and the techniques practiced during the week at home. Yoga classes don’t have to be expensive. Some hospitals allow patients to form unofficial yoga groups. These are often made up of patients with similar conditions, thereby establishing an additional support system for patients coping with the same difficulties.
Another way to make yoga more affordable and accessible is to form a yoga class on your own. It doesn’t have to be limited to people with a chronic condition, though that may be a means of helping you form a sympathetic community for support.
Choosing the Right Type of Yoga
There isn’t just one kind of yoga. Some types focus on movement, while others are interested in concentration and inner focus. Accordingly, a particular patient’s chronic condition might prohibit against practicing certain forms of yoga. For example, multiple sclerosis patients should avoid heat yoga, due to heat intolerance. This tendency of symptoms to worsen due to sustained exposure to heat would definitely become problematic given the increased temperature in which heat yoga is practiced.
Consider the particular characteristics of different yoga disciplines and how they might fit with the conditions of a given chronic illness:
• Hatha Yoga is recommended for beginners and is best for those who can’t overexert themselves. Gentle movements are performed while keeping the primary focus on breathing and holding poses. This form of yoga is good for stretching in a way that’s not too strenuous on the body. This would be good for patients with some forms of cancer who may tire easily due to treatment.
• Iyengar Yoga is a heavy form of yoga using blankets, blocks, and other objects. This form of yoga is recommended for those who need to work on balance and coordination, and would be suitable for patients with MS.
• Kundalini Yoga is an advanced form of yoga that may be beneficial to cancer patients as a form of exercise. The focus is on maintaining posture and breathing while in different poses.
• Heat Yoga (Bikram or Moksha) is recommended for patients with chronic pain in muscles or joints, like lower back pain. This style incorporates poses from other forms of yoga in rooms heated to about 105 degrees Fahrenheit. Proponents claim the increased heat helps remove toxins from the body while stimulating muscle and tissue.
Many patients report feeling more comfortable with a marked reduction in symptoms and side effects of their conditions after yoga sessions. Yoga tends to give patients a feeling of hope and optimism that helps make coping with a chronic condition just a little bit easier. It should be noted that yoga or other methods of relaxation and meditation are not meant to be a substitute for a patient’s regular medical treatment. Yoga will not cure any chronic illness, but it may reduce suffering and make a patient more comfortable, receptive to treatment, and promote overall health.
Allison Gamble has been a curious student of psychology since high school. She brings her understanding of the mind to work in the weird world of internet marketing with psychologydegree.net.”
