10 ways to maintain a sense of Control with a chronic illness

It’s easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips.

With chronic illness you are forced to be your health manager so it is up to you to gather information and to make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you, though there is always the hope of having them return. As you go along you will find a management style you are comfortable with.

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. Yahoo has a more old-school [...] continue the story

I’m the author of “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” (Wisdom Publications 2010). The book has over two dozen tools and practices to help people live well with chronic pain or illness. It’s Buddhist-inspired but is non-parochial: the practices in it will work for anyone. The theme of the book is that even though our bodies are sick or in pain, we can learn to live peacefully and even joyfully. For reviews and other information, including where you can order the book, please go to http://www.howtobesick.com Thanks for watching the video! Toni Bernhard

December 17, 2010

By, Toni Bernhard, JD September 2011

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, despite this pattern in my own behavior, when I became chronically ill and didn’t get back to people who offered to help, I decided that, because they failed to follow-up, their offers weren’t sincere.

I learned otherwise quite by chance. A friend came to visit and showed me an exquisite handmade dress she’d just bought for her granddaughter at a local boutique. When I told her how much I loved it, she asked if I’d like to get one for my granddaughter. I said “sure,” and before I could get “but I’m not able to go shopping” out of my mouth, she was out the door.

She returned shortly with the dress in two sizes for me to choose from. I picked one, wrote her a check and, [...] continue the story

By Candy Czernicki June 27, 2011

If there is no struggle, there is no progress. ~ Frederick Douglass

Let’s get this out in the open: I am bipolar II. That means the mania is really low-key and infrequent and the depression, at least in my case, for most of my life, has been pretty much nonstop.

There are degrees of depression, of course. Mine gets severe relatively quickly and stays that way a relatively long time. Yes, I have been an inpatient at psychiatric hospitals. Yes, I have self-harmed. Yes, I have been on every psychotropic medication known to man, and failed most of them. The two that I’m on right now combine for one really annoying side effect.

I have even, since about New Year’s, been undergoing a course of electroconvulsive therapy (ECT). My memory is shot, along with many other things, but the suggestion to do it came up in month 6 of an unrelenting depressive episode. Nothing else was working.

Despite all this, I’ve managed to push through as best I can. I’ve found work, and a work schedule, that works for me, as well as a compassionate employer.

It’s still hard, though, and most people still don’t understand. They tell me to snap out [...] continue the story

November 2, 2011

I hear the phrase a lot from doctors, physician bloggers, surgeons, nurses, fellow patients and loved ones; being labeled the “difficult patient” because of a chronic or complicated illness.

I’ve heard “the difficult patient” referred to as a lot of things: the patient with a nasty attitude; the patient who refuses treatment or refuses to take care of their body; the patient with a complicated family situation; the patient with a terminal/complicated disease pattern; the patient whose disease remains a mystery; the patient who can’t give a straight answer; the patient who has a chronic illness.

Most of those definitions I understand. But it’s the phrase I have an issue with when it comes to being the chronically ill patient.

For those of you reading this that are healthy, I want you to stop and imagine the following: You are sick all of the time. You have fevers and can’t control when you’ll have a hot flash or cold sweat or chills; diarrhea or constipation; cramps or nausea. You have pain: muscle and joint everywhere, all the time and often without relief. You might have chronic migraines, numbness, memory loss and disorientation that comes and goes. You are fatigued, and by [...] continue the story