Enroll in The School of Whatever Works

I've met so many people on my illness journey who are absolutely sure they know the type of treatment that should work to get them well. They are also sure they know what won’t work. This conviction endures even when the thing they believe in isn't successful, and the thing they reject just might be. Often people have an either/ or bias when it comes to alternative or traditional vs. western medicine. Sometimes too, there is a bias around diet, either the patient doesn't think food choices matter at all, or conversely thinks that dietary choices are the key to both getting sick and getting well.

I don’t know why treatment options are loaded with so much prejudice and rigidity, maybe it’s because of what our parents taught us, or our own past experience. Maybe it has to do with a preference for tradition for some, or a desire to try anything new for others. My experience has been that what works for me fluctuates over time. This may be due to changes in my symptoms, or advances in research or simply that my health care practitioner and I come across something new. I’ve found it’s best to keep an open mind. The one caveat I would warn against is the promise of the ‘miracle cure’, particularly when that treatment professes to cure multiple medical conditions, is flashy and expensive and does not have published peer-reviewed research or testimonials from patients who have benefited in the long term. The desperation of the chronically ill makes us easy prey for the snake oil salesman. As one caring physician said to me, “We’re all desperate to find a cure and to help our patients, that’s why we entered this field. If something out there really, truly worked, we would all be doing it.”

In addition to surgery and drug therapies in many combinations and doses, I believe I have benefited from dietary changes, physical therapy, massage therapy, hydrotherapy, acupuncture, herbal supplements, homeopathy, enforced bed rest, stress reduction and more. I've tried so many things, it’s hard to know which helped most or when, so I gave up trying to figure it out. I did find that drug therapies seemed most effective when my symptoms were most acute, and some alternative practices seemed to kick in better once my symptoms were stabilized. I can’t speak for anyone else, I think we are each unique and must find our own way, but these various strategies have worked well enough for me to keep me a student in The  School of Whatever Works.

Make Friends with Fatigue

Americans speak of illness in the terms of war. Dealing with cancer is almost always referred to as a fight or a battle. When a patient dies the obituary often states that death occurred only after a heroic struggle. I would submit that with chronic, painful conditions this endless fighting is a losing and costly strategy, particularly when it comes to dealing with the overwhelming fatigue that is so common among the chronically ill.

When I first became ill, I continued to cling stubbornly to the activities I’d always enjoyed—work, exercise, an active social life, the theater. The consequence of trying to maintain this busy life was that I kept getting sicker and sicker. Finally, when I started to listen to my body and rest when my body was telling me it needed to rest, things began to stabilize and then slowly improve. I learned my mind was sharpest early in the morning, but by mid-morning I needed to go back to bed for a while. Any errands or chores were best done midday. If I wanted to make dinner and enjoy an evening with my husband, I needed to rest in bed in the late afternoon for an hour or two. I learned that my energy tank often hovered near E, and I had no reserve tank. I spent a lot of time in bed for a lot of years.

I feel that making friends with fatigue was a way to honor and respect my illness and integrate my emotional and spiritual self with my physical self. It was an act of making positive peace with the reality of my new life. When I failed to pay attention to fatigue, my symptoms flared and my body let me know the rules hadn’t changed. Sometimes it was worth it to overdo a bit, and pay the price, but most of the time I complied. I learned to love the quiet and my rest period became a cherished time for contemplation and reflection, and ultimately transformation. Once I quit fighting my illness, fatigue became not only my friend, but also my teacher.

Be Honest About How You Feel

When someone asks, ‘how are you?’ the customary answer is just one word, ‘fine’. Those of us who live with chronic illness and pain are hardly ever fine. Maybe better than yesterday, or good enough to make it out of the house for a while, but fine? Not often.

If we are going to build a supportive community around us, we need to be honest about how we are feeling. It’s not in our interest to imply we are fine when we are not. We also don’t want to be a constant complainer, because no one wants to be around that person. Being honest about how you are feeling requires a bit of balance.

The trick, I’ve found, is to first be realistic about the person you are talking to and the context of the conversation. Then be as honest as you can, without whining. For example, some people don’t really want to know how you are; they’re just making small talk. It’s like the person who says ‘let’s do lunch sometime’ more to end the conversation than to actually make a date for lunch. So, I might say to this person no more than, “I’m just OK today.”

Someone who actually cares, but is on the periphery of your life might get a little more expanded answer, “It’s been a tough week, but I’m starting to feel better today.” Or conversely, “I’m just at the beginning of a flare, so I’m going to enjoy today as much as I can.” This conversation may or may not go any deeper.

For someone who is truly part of your everyday life, knows you well and knows you are ill, you need to tell the truth because the way you are feeling from day to day also affects them. “I need you to know I’m having a rough day today, so if I’m quiet or seem moody, it’s not you, I just don’t feel very well.” To the children it might be, “Mom’s going to need a helping hand from you today. I’m not feeling too strong, so thanks for being my big boy/girl.”

It is possible to be honest without coming across as a victim. It is possible to ask for help without seeming helpless. The people who really care about you would prefer to know the truth and will be supportive. If there is someone in your life who wants you to pretend to be doing great all the time, maybe they need a little push to get real, or a harder push to move outside the strong circle of support that you are building around you.

Never, Never, NEVER Give Up

The sick are tempted to give up in many ways. The most tragic is to give up on living in response to unrelenting pain. Hopefully before this level of despair takes hold, we can find ways where persistence can move us toward a better life, even with illness, and even while living with pain and reduced function.

The first path is to never give up until you find a competent doctor, experienced in dealing with your symptoms or diagnosis. The next step is to begin effective treatment. For many of us, just accomplishing this takes years. Patients with vague, hard to diagnose illnesses are often sidelined by doctors who don’t know what to do with them. Our health care system pays for procedures and interventions, and if your doctor doesn’t connect you with the tools in his or her toolbox, you may be treated, literally, as if you are not worth much. Doctors may respond to their own lack of expertise by blaming the victim, implying that if the fix isn’t obvious, you must be faking, malingering or mentally ill. Understandably, after experiencing this kind of treatment, patients can be tempted to give up looking for answers, taking refuge in bitterness, or magical thinking about magical cures, or by taking the mediocre doctor’s prescription to heart and deciding to ‘just live with it’.

A better solution is to fire the doctor, move on, and never give up until you meet the person or, more likely, the team that can offer help. There are outstanding physicians out there, and they are not necessarily at elite institutions. They are in small towns, and in small practices. Thy may have the wisdom of years, or the fresh insights and enthusiasm of youth. They may be GP’s or internists who will know where and to whom to refer you. Keep looking. Once you have found your partner, know that settling on effective treatment may also take time, a lot of it. You are unique, your symptoms and your system is unique, it may take dozens of trials and adjustments and the aid of many providers before you hit on the combination that helps bring your symptoms and system into better balance. This persistence does not guarantee a cure, or even the elimination of your symptoms, but it may mean you can find relief that keeps your illness from progressing and makes your symptoms less severe, so that you can live more fully.

Finally, making peace with your new life is not the same as giving up. Wailing about all you have lost and how much you want your old life back is part of the grieving you may need to go through, but it is also stressful and exhausting. At some point we need to accept our new life with illness, while never giving up on making it the best life it can be. These aren’t mutually exclusive, but two parts of a healthy whole.

10 Blogs, 10 Tips: Living Well, Even While Sick

In our book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, I wrote a chapter called ‘Joy’s Top Ten List for Living Well, Even While Sick’. These were attitudes and strategies I developed after I’d accepted that my illnesses were not going to go away. Seeking a diagnosis, finding the right doctors, and experimenting with effective treatments took a long time, but finally I got to a point where I asked the question, “I wonder if it is possible for me to live well, even if I can’t get well?” I found that it was, and these ten strategies helped me build a more satisfying life with illness.

I’ve revised and adjusted the items over the years, and over time I realized I would continue to live by these principles even if I enjoyed perfect health someday. One of my latest blogs addresses #1, Take Care of Yourself First. For the next nine blogs, I will take each of the next items and expand on what it means to me and how I’ve utilized each strategy in my life. I hope these blogs will help you build a better life with illness, and I would love to know if you have any different items on your own Top Ten List you’d like to share. Here’s my Top Ten:

Joy’s Top Ten List for Living Well, Even While Sick

                1.  Take care of yourself first.

                2.  Never, never, never give up.

                3.  Be honest about how you arefeeling.

                4.  Enroll in the School of Whatever Works.

                5.  Make friends with fatigue.

                6.  Live as a child.

                7.  Step out of the box.

                8.  Search for silver linings.

                9.  Find a way to share your gifts.

              10. Be Still.

Stay Tuned!

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.