My family and close friends have done so much for me since I became chronically ill in 2001, and I’m deeply grateful to them. I’ve written this piece because there are a few important things I want them to know about how I feel. Although this piece is personal in nature, I’ve been hanging out online for over a dozen years with other people who are chronically ill (which includes those ...

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shutterstock_134903705 My illness has been as hard on my caregiver-husband as it’s been on me. I know how fortunate I am that he’s stuck around and that he never complains about the extra burdens he’s had to take on. My heart goes out to those of you who don’t have someone to care for you in this way. This piece covers several ways ...

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If only our lives were more predictable and certain, we’d feel a greater sense of security and safety. Yet, much of what happens to us is beyond our ability to control. This is true whether we live in a third-world country or in the most advanced scientific and technological environment. It’s also true whether we’re struggling to make ends meet or living in the lap of luxury. No one is immune ...

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From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances. 1. Young people are treated as if their health issues can’t possibly be chronic. I confess that before I ...

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In a study published in the Journal of the Royal Society of Medicine, “Quality of life: impact of chronic illness on the partner,” the authors stated: "… the most striking research finding is a tendency for the partner’s quality of life to be worse than that of the patient." The people who are least likely to be surprised by this finding are not just caregivers, but those who are in their ...

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As we reflect on the year that’s passing, it’s not unusual to formulate wishes and resolutions for the new year. I’m not much for resolutions anymore, but I do have hopes and wishes for me and for my readers. Of course, my first wish is that those of you who suffer from chronic illness -- including chronic pain -- have your health restored. I know that, for some, this is a ...

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I’ve been chronically ill since I contracted a viral infection in 2001. Were I to recover, I’d take these six hard-earned lessons with me into the land of the healthy. 1. Less is more. I used to be an accumulator. My life was filled with stuff: books and magazines that sat unread; CDs; jewelry; knickknacks and trinkets; clothing and all its accompaniments (shoes, belts, scarves). Since becoming sick, I’ve learned that less ...

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I love to-do lists. I depended on them when I was working outside the home. I’ve depended them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find. A few weeks ago, I realized I could benefit from a not-to-do list that would ...

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shutterstock_114512791 I’ve had my share of unsuccessful experiences with doctors and at medical clinics, including being intimidated by them. But after twelve years of chronic illness, I’m happy to report that I’m doing better in this uncomfortable setting. Here are six strategies to help minimize the odds you’ll be intimidated and to help ensure you make the most of the short time allotted ...

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When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after twelve years of illness, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we ...

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shutterstock_112225664 Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied ...

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shutterstock_247007314 It’s easy for those with health problems to complain about what we don’t want to hear others say to us, but I thought it might be helpful to let others know what we wish they would say to us. “You look so good, but how are you really feeling?” It’s hard for us to respond to comments like, “You look so good” (or ...

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A year ago, KevinMD.com was kind enough to post my piece, 10 Tips from 10 Years Sick. Well, a year has gone by and I’m still sick. So, I’ve re-visited that post, changing several of the tips and adding to others. And, of course, there are now 11 tips, not 10! At the end of the piece, I hope you’ll share your own experiences. 1. The onset of chronic illness ...

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Last year, I was referred to two different dermatologists because I have two skin conditions and each dermatologist is an expert on one of them. (I know how fortunate I am to have access to this level of medical care.) Something amusing happened at each visit. After examining me and deciding on a course of treatment, the first dermatologist said, “When you get home, don’t look up this condition on the ...

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Labels matter. We quickly form judgments based on them. If we hear someone called lazy, the label “lazy person” attaches in our mind even though we may not have even met the person. The same is true for labels given to various medical conditions. If the label for an illness uses language such as “fatigue,” we abstract from our experience and think we know what it’s like to suffer from ...

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It’s that time of year. The media is filled with stories about people traveling to be with loved-ones. Holiday decorations and yummy recipes abound. But for many people, the holidays are a difficult time of year. This piece is for those of you who face isolation during the holidays, either because you’re unable to be with others at all due to health or financial limitations (which often go hand in ...

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In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain  or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form ...

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In May of 2001, I got sick with what the doctors thought was an acute viral infection. But I didn’t recover. As the months went by and I didn’t get better, I felt as if I’d entered a parallel universe that I didn’t know existed. One reason this universe is largely invisible is that many people living with chronic pain or illness don’t look any different from those around ...

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How many times have you said to a friend or relative in need, "Let me know if there’s anything I can do to help," and when you didn’t hear back, fail to follow-up? I’ve lost count of the number of times I did just that—fail to follow-up when I didn’t hear back from someone in need, even though I would have been happy to help in any way I could. Yet, ...

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shutterstock_247007314 Ten years ago this summer, my husband and I flew from California to Paris, planning to immerse ourselves in Parisian culture for three weeks. The second day there, I got sick with what appeared to be an acute viral infection. I spent most of those three weeks in a Parisian bed. Ten years later—I’m still sick. I didn’t research what I should ...

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