Patient Effectiveness: How To Be Sick.

Here’s the frustrating thing. Schoolteachers get training to be schoolteachers. Pregnant moms and their partners can take a class on childbirth. Trained therapists help people deal with mental and emotional problems. Physicians, nurses, lawyers—all get training, years of it, on how to do their job.

Nobody teaches you how to be sick, at least nobody is in charge of it, or certifies it, or let’s you know when you are ready to graduate and do it well. In my experience, it’s a rare and special physician who will diagnose a patient with a chronic illness and then take on the additional role of making sure that the patient has all the resources needed to successfully navigate the difficult journey ahead.

This educational gap is a big reason why being sick is such a hard job. And it’s no wonder sick people often feel so lost, confused and abandoned. Our providers are pretty good, and getting better, about teaching us how to take medications. Not so good at all the rest of the challenges we face, like managing pain, fatigue, grief, work and family challenges, diet, exercise and provider relationships. If I had to name a single reason for this, I’d say it’s because the American health care system is built on the assumption that patients aren’t supposed to stay sick. We believe in cures!

Now that we face epidemic levels of chronically ill citizens and are counting the dollars this costs us, there is movement in our country to become more pro-active at helping people learn how to be sick effectively, and I am a passionate part of it. There are career paths for patient advocates and patient navigators and a national committee has been formed to establish certification standards. There are helpful books, like my own, not on a specific illness, but on the experience of being ill. There are patient support sites and forums and disease specific groups offering resources. Health care and hospital organizations are beginning to offer patient self-management training.

Even with this promising forward movement, I don’t think there is a national sense of obligation to patients. I don’t see a widespread social agreement that sick people need and deserve support they cannot provide for themselves. Effective patient education is far from a standard of care. Change can’t come too soon.

Is Your Body Trying to Tell You Something?

A few years back I read a great book by Jim Lynch called The Highest Tide. It was about a young boy who was fascinated by the sea life in the bays around his Pacific Northwest home and spent early mornings in his boat roaming the shallow waters. Then he began to notice that the sea life was changing, new things appeared he had not seen before and did not seem to belong. His observations caught the attention of the local press and he was asked by a reporter, “What do you think Mother Nature is trying to tell us?”

He answered, “PAY ATTENTION!”

I was diagnosed with interstitial cystitis nearly two decades ago and my condition has been well managed for years, but recently I had a flare of symptoms, primarily pelvic pain that went on for weeks and weeks. I thought, what is my body trying to tell me? I reviewed recent activity and stress levels, and had to acknowledge I was way over the top in both areas. We sold our house, moved, downsized and I packed and lifted boxes for weeks and weeks. That hard work was now past, but I was still in a flare.

I reviewed the list of foods to avoid for IC patients and saw that many new ones had been added since I last checked. Had I made any dietary changes in recent months that might contribute to this persistent pain? Imagine my dismay when I realized the culprit could be that lovely little shot of Tequila with a squeeze of lime I’d been enjoying in the evenings recently. I cut it out, a few weeks later, flare resolved. Darn, I hate when that happens, when the good news is bad news.

The second bit of compensating good news is that my body was trying to tell me something, and when it got loud enough to get me to PAY ATTENTION, the answer emerged. A good lesson—re-learned. 

Did you know. . .

Did you know that author Joy Selak is a columnist for the National Pain Report?

Click here read her contributions!

Put Yourself First: 5 Tips to Better Manage Chronic Illness

In order to successfully manage a long-term illness, I had to learn to Put Myself First. This was hard for me, and I think it may be hard for many women, as we are often brought up to be pleasers and caretakers. It required a new level of honesty about my illness, but as I made this change, I found friends and family appreciated my candor and were willing to work with me. Over time, I realized that communicating my needs and limitations was far easier than making myself sick trying to please others, or pretending to be was someone I was not. By respecting my limits, my friends and family were able to take a positive role in helping me out and maintaining our relationship in spite of illness. Here are a few things I learned to do that really helped.

1. Avoid unnecessary time commitments.

            I live in a friendly neighborhood and many of the women make walking dates so they get to visit and get in their exercise at the same time. I learned that I should exercise when I felt up to it, not on a pre-determined schedule, and that adding talking to exercise was too tiring. I told my friends this, and added that my solitary exercise time was  also important to me for sorting out my day and my thoughts.

2. Let friends know about your quiet time.

            I rest from 3-5 each afternoon, as regularly as I can. I learned that I needed to let my friends know this schedule, so they wouldn’t call or interrupt this time. They have been very respectful and, I think, appreciative that I’ve offered them this way to support our friendship. Now many of my friends   start a phone conversation by asking, “Are you resting right now?”

3. Let friends know your boundaries of activity.

            Similar to the above, when we have occasion to travel with friends we let them know that while we enjoy going out to see the sites with them, I need to rest in the afternoon, otherwise I won’t be able to enjoy our evening together. What usually happens is our friends decide they want a rest period, too!

4. Clarify your limits before agreeing to a new task.

            I volunteer for our local professional theatre and have enjoyed many leadership roles over the years, but before I agree to chair a committee or lead a project, I always make sure others involved know I have a chronic illness and it limits my energy and sometimes my reliability. I’ve learned to pace myself, but having this out in the open takes a lot of pressure off of me.

5. If you are having a bad day, say so.

            When I’m having a flare, I generally get very quiet. People may think I’m mad or sulking if I don’t let them know I’m coping with symptoms and distracted by pain or fatigue. After a while, the people close to me learned to ‘see’ the flare and often brought it up themselves.

As I learned to Put Myself First, the task of telling people who I am and how I need to live became practical and factual, rather than embarrassing and emotional. I wasn’t whining or complaining, just being real, and people took it that way. It got to be no different than sharing any other unique character trait that may limit or order a person’s life. One of my unique traits just happens to be that I live with illness.

Welcome!

Welcome to my first blog post!

My name is Joy Selak. While I'm not a physician, I am a sick and happy PhD.

This is a new experience for me as I am very experienced with the ups and downs of chronic illness, but not so much with the ins and outs of social media. Please be patient, and your advice and comments are welcome! It is my hope and intent that my book, blog and website,http://www.chronicinvisibleillness.com/ will be a resource for both physicians and patients, a forum where we can learn together, become more sensitive to each other’s needs and challenges and as a result enjoy more compassionate care and better outcomes for all. 

I recently joined the facebook world! Find me here: https://www.facebook.com/LivingWellwithDrJoy, and "like the page" for discussions, newsworthy articles, and advice as it relates to living a life with chronic invisible illnesses.

In my book, co-authored by my physician Dr. Steven Overman, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, we identify four phases of the chronic illness experience: Getting Sick, Being Sick, Grief and Acceptance and Living Well. For each phase, I share 3 true-life stories with elements and lessons I believe are common to many patients who have been through these difficult passages. Dr. Overman offers an analogy for each phase that expresses the heart of the challenge and then adds 5 Travel Tips that target particular skills that must be acquired to move ahead. This format gives us a wealth of ideas for short blogs to keep the conversation moving. Our intent is to ‘write what we know’. As we learn from our experiences and relationships with other patients and health care providers, I will share the latest with you. For each blog, I will anchor it in the phases and stories of the book, or to a Travel Tip, if that is relevant.

For this first post, I would like to return to a subject we touched on only briefly in the book, in the Living Well phase. Item #3 on my Top Ten List for Living Well Even While Sick was “Learn to be honest about how you are feeling.” Part of that involves being candid and unashamed of your condition. It’s not your fault, you are not trying to whine or complain—you just need people to know the truth of your life so they have realistic expectations. A few months ago a freelance journalist contacted me for an interview. She wanted to talk about when NOT to tell. She had lived with a chronic condition for many years, now had school age children, but had never told them about her condition as she felt they were to young to understand and might be frightened. She had also never told her employers, fearing she would lose work. Conversely, my children were teenagers as my health began to fail and there was no hiding it from any of them. They were as anxious for a diagnosis as I was. I also had to leave my career and go on long-term disability, which meant spending 3 long years trying to prove I was sick to a for-profit insurer motivated to deny my claim.
I hadn’t really thought about the situations when it is not wise to tell. Here’s what I’ve come up with:

Family – You need their support and they need to do more around the house to lighten the load on you. While the little ones may be too young to understand, once they are older, they deserve honesty, as they have good sniffers and will know something is wrong. I would suggest children are old enough to know when they are old enough to be assigned household chores. Your spouse also deserves to be allowed into a partnership with you to cope with this reality. Don’t forget, the illness, in a very concrete way, is happening to your spouse or partner, too. They will feel helpless if they are shoved to the side, better to ask for help when you need it and let them know when you are having a bad day.

Work Place – This is really a double-edged sword. If you do tell, you may be less likely to be considered for promotion or assignments. If you don’t tell, and have more absences than a healthy person, you may be seen as a malingerer. If, in the end, you need to make a disability claim as I did, you will need the support of your human resources department. If you have hidden your failing health, it will be more difficult to access that support. My advice is to be absolutely candid with your supervisor and offer to work collaboratively with him or her to assure work gets done. Anyone beyond that can be told on a need to know basis. If someone is depending on you, they probably need to know.

Social – I think in the early years of chronic illness it is natural to need to talk about it with friends. It’s emotional and life altering; we rely on our good friends for sympathy and understanding. But if that’s all you can talk about, you may find friends turning away from the burden of it. Either you are telling too much too often, or this person isn’t quite the friend you thought. If you are in this situation, it’s absolutely natural and wise to see a professional counselor to help you cope with this overwhelming time. I’ve lived with illness so long now, it’s no longer so emotional for me, telling is a fact, rather than a story. I may say nothing more than “I have this chronic illness, so I may not be as socially available as your other friends.” Or, “I have to rest each afternoon, so my friends generally don’t call me between 3-5.” I find that the less laden the telling is with emotion, the more sympathy I receive.