Chronic Invisible Illness


Joy H. Selak and Dr. Steve Overman

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The Things Illness Didn’t Take Away

Joy H. Selak September 2, 2013

www.joywrites.com

At the beginning, the business of getting sick was a full time job—finding doctors, getting diagnoses, starting treatment, learning to live differently and, in my case, a long wait for a disability claim. After a few years, once my life was more about being sick than getting sick, I volunteered at Austin’s ZACH Theatre. I had loved the performing arts my entire life and while performance was no longer among my capabilities, I could be a volunteer at this outstanding professional theatre.

Soon I was on the board of trustees and was asked to chair a committee. I sat down with the staff and other board leaders and let them know I was a sick person, I had good and bad days, and I wasn’t always reliable. They listened, but took me on anyway. Over the years this happened again and again, I was invited to lead, I warned them of my limitations, they rolled their eyes and gave me the job.

I came to understand that what I had to offer was a rare commodity in the non-profit world. I had time. Unlike other talented leaders who were maintaining full time careers and raising families, in addition to their community service, my time was free to serve. I eventually became president of this stellar arts organization. We built a new theatre, raised the quality and professionalism of our youth programs, hired professional, experienced staff, and made a balanced budget part of our culture.

My last board meeting as president was this week. I was given a collection of photos from my tenure in a lovely, large frame with an inscription.

“With gratitude for your passion and vision.” 

The passion and vision that my colleagues were so kind to note came from an abundance of time. Over my years as a leader, I had time to think about where we were headed, to look at many angles, take the long view and envision the future. Time, passion and vision were three things illness did not take away from me. In fact, they are three gifts that illness gave me. For this, and a theatre that, early on, trusted a sick person to lead, I am so grateful.

 


In American Health Care, Who’s the Client?

Joy H. Selak, August 18, 2013

www.joywrites.com

Some years ago my husband and I built a custom home. One day he was in the local hardware store and ran into one of the contractors working on our house. The contractor was quite happy, as he had been awarded a store credit for buying the building materials for our house at this store. My husband sought out the manager and asked him about this.

“Yeah, we do that for all the contractors,” the manager said.

“How does it work?”

Well, the more they spend, the bigger the credit.”

“So do I get a store credit?” my husband asked.

“No, why?”

“Because the building materials were for my house and I paid for them.”

“Yeah, but you’re not the client,” the manager explained.

“How can I not be the client, it’s my house.”

“Because you will get your house built and that’s the end of you. If we treat the contractor’s right, they will come back here and buy their supplies for the next house and the next one.”

“So you are giving the contractors a reward for spending more of my money?”

“Well, when you put it that way….yeah, I guess so.”

We didn’t have a great experience with that house and in time came to understand the objective was to bill us as much as possible, using statements and language that was confusing and vague, while erecting barriers that kept us feeling powerless and protected the lifers working in the system. We were the amateurs; they were pros, and they were out in front of us at every turn. Sound familiar?

Many America patients experience health care in a similar way. We often come at it weak, frightened and poorly informed. We might assume that as patients, we are the clients, but we’re not often treated that way. Basic customer service would not include leaving a sick person sitting in a waiting room for hours without any explanation as to the delay. We’re rarely asked to complete satisfaction surveys, ubiquitous among retailers who clearly do value their clients. The niceties and amenities that would keep us coming back to other business are lacking. If we want service, like being informed of our test results, we often have to ask for it, it isn’t offered. When hospitalized, we can experience an attitude of dismissiveness, as if once the procedure or surgery is done, our continuing presence is a distraction and a chore.

I can point to a few reasons for this. We are captive audiences—we don’t get to choose when, or if, to be sick. My choice among providers is often limited by insurance and geography, so the competition in the marketplace doesn’t hinge on my satisfaction. American medicine is designed to excel at acute care and interventions, so patients who access these more expensive services may be more highly valued. We’ve been taught to be passive; to treat the doctor as boss, and this is slow to change. And those who are weak and sick may be more challenged at banding together, raising a collective voice and demanding service. Like the home owner, each patient may be a cog in the wheel that makes things go round, but the actual clients are the ones who continue to work in the field and depend on each other for their future success—the hospital groups, insurers, pharmaceutical manufacturers, companies developing diagnostic equipment and supplies, labs, physicians and support staff in all these areas.

The Affordable Care Act may bring some positive changes. Citizens will have more choices around insurance and more individuals will be buying their own insurance. There will be incentives to encourage better outcomes and reduce readmissions. The numbers and the cost of chronic illness has become a real concern and there seems to be motivation to address this. And after all, the new healthcare buzzword is ‘patient-centered care’. I guess we’ll see, won’t we?


Are You Sure You’ve Hired the Right Doctor?—What To Do If You Haven’t

Joy H. Selak, July 4, 2013

www.joywrites.com

It took me seven years and many doctors in two different states before I got a diagnosis that led to effective treatment. Desperation helped. I went to an internist, looked him in the eye and said, “I know something is wrong with me. I’m afraid I’m going to die before I find out what’s killing me. Will you please stay with me until we have answers?” As I recall I was clutching his arm as I spoke.

He nodded gravely and said, “Yes, I will stay with you. We will start at the beginning.” He took a complete family health history and performed all basic tests. He had the answer, at least the first answer, in a few weeks. “I think you have Interstitial Cystitis,” he said and handed me a referral. “I want you to see this urologist for confirmation.”

I got the confirmation and gratefully began treatment, only to find that the urologist wasn’t the right doctor for me. His menu of treatment options was very limited. When I reported a reaction to a medication he complained that his ‘other patients had never reported that side effect’. He talked down to me, like I was a child. Most telling, his waiting room was filled with elderly men and IC primarily affects women.  I had to fire him.

I started researching IC patient advocacy groups, asking around among my friends, nurses I knew, other doctors, people at backyard cookouts, anyone. Who knew a female urologist? Who was treating female patients with IC? Who was doing research in the field? In time, I found two women at a university teaching hospital and they were perfect for me.

I think women have a hard time firing a doctor—it’s like firing a hairdresser. Perhaps it’s the human touch, the highly personal conversation and assumed intimacy. But we need to understand we hire a doctor to provide a professional service, like an accountant or attorney. If we don’t hire the right person, and the work isn’t moving forward, we need to be willing to move on.

One time I was speaking on this subject at a meeting for patients with peripheral neuropathy. After the meeting a neurologist involved with the group made this comment, “I’m glad you said that about firing the doctor. Sometimes it isn’t a bad doctor, it just isn’t a fit. The personalities don’t mesh. But doctors don’t get to do the firing, patients have to do that.”

What she said is true. If you want just the right doctor, you have to go out and find that person, maybe by trial and error. Look for these qualities:

  • ·      Experience in treating your illness or your symptoms
  • ·      A willingness to listen and to believe what you report
  • ·      Respect for you as a unique, whole person, not just a symptom or disease

What have been your strategies for finding the right doctor, or firing the wrong one?


 Improving Chronic Illness Care: Who Needs to Change, the Patient or the System?

Joy H. Selak, June 8, 2013

www.joywrites.com

There is a great deal of interest right now in improving chronic illness care, but as I read through the many articles and initiatives it seems that efforts to improve the way America deals with the chronically ill is largely focused on the non-compliant patient. Illnesses that can be related to lifestyle, such as diabetes, stroke, heart and lung disease are receiving a great deal of attention and efforts are being made to improve patient’s adherence to medication schedules as well control obesity, smoking and other unhealthy lifestyle choices.

 

It is no doubt helpful for patients to receive this aid and instruction. Home visits, classes, better monitoring and mobile phones apps can all add to an individual’s success in managing and perhaps even overcoming these lifestyle related chronic conditions. But what about those patients, the tens of millions of patients, who suffer from diseases that are genetic, neurological, musculoskeletal, autoimmune or otherwise poorly understood? What about those patients whose illnesses strike in the prime of life and have no known cause or cure? What about the patients who go from physician to physician for many years before even getting a diagnosis, let alone access to effective treatment? How do we, as a nation, improve this aspect of our health care system? And are we exhibiting a commitment to do so?

 

As a patient diagnosed with multiple chronic illnesses—urological, autoimmune and neurological, who searched 7 years for the first diagnosis, and who has maintained normal weight, blood pressure and chlorestoral for a lifetime, I was frequently dismissed and increasingly frustrated at my lack of access to effective diagnosis and care. As patients, we all have an obligation to do the best we can to maintain a lifestyle that supports our overall health. We also have the right to ask the health care delivery system to change in ways that will help a blameless patient access consistent, quality care. What we need is:

 

  1. A better referral system, one that does not leave it up to the uninformed patient to find the right doctor.
  2. Acceptance and sympathy that a patient can be suffering from serious illness even when tests are normal and effective treatment is elusive.
  3. A commitment in the profession to offer compassionate, consistent and collaborative care to patients with poorly understood and hard to treat conditions.
  4. A cultural resistance to the easy route of blaming the victim, suggesting illness is ‘all in your head’, or recommending that patients ‘just exercise more’ when diagnosis and treatment are challenging for the physician.

 

That’s not too much to ask, as we travel together on this two way street, is it?

 

 


The Role of the Caregiver

Joy H Selak March 22, 2013

www.joywrites.com

Recently I was a speaker at a patient conference attended primarily by chronically ill patients and their family members or caregivers. After my talk, a question was passed up to me from the audience. The note said, “If my partner is too fatigued to do something we planned, what is my role?”

I said I wished my husband had been with me to answer, as he has been so wise in navigating these difficult times of long illness, good and bad days, and uncertainty. His constancy has deepened and strengthened our relationship, and is one of the silver linings of this time of illness. My simple answer was, “If your partner cannot do something you planned, you might ask if there is anything he or she needs from you. If the answer is no, then I’d say you are off duty and should feel free to go on with the plans on your own, if that is your preference.” This is basically what we do in our home.

I realize the relationship is not simple, and working out this new partnership can be difficult. Tension and misunderstanding can arise from several common behaviors.

  1. The sick partner is not clear and honest about how they are feeling on any given day, either understating symptoms to be brave, or overstating them to try to convince a spouse how miserable they are.
  2. The healthy partner is desperate to ‘fix it’ or to ‘do something’ and is overinvolved in treatment and lifestyle decisions that are more appropriately between the patient and their health care provider.
  3. Both partners pretend things are other than the reality, so neither one can realistically offer, or receive, help and support.

My husband has said, “It is Joy’s job to find out what is wrong and decide what to do about it. My job is to support those decisions.” This clearly defined, but shared responsibility has made things easier on both of us. I have to work hard to learn about my condition and make treatment and lifestyle decisions that will support my health and healing. He is always there if I need him to be. This would include coming with me to appointments when I am too sick to think straight, and helping me clarify the results of the meeting. And it would include going on with his activities and leaving me alone when I am too fatigued to talk or be decent company for him.

What have you found to be successfully strategies for navigating illness as the healthy partner or as the caregiver?


How can I get well if I don’t even know what I have?

Dr. Steven Overman, January 27, 2013

www.docoverman.com

 

On the first blog, which is posted below, Joy welcomed you and introduced our ideas. Let me also welcome you to this conversation among team members—care providers, persons with symptoms and others with defined illnesses, and their family and friends. Sooner, or later, just about all of us will be in one of these groups, and likely more than one. And that is the point—we are all on this challenging journey together. It is my hope this blog can help you navigate better.

Last week a patient was in for her second visit and was frustrated when I told her that all of her lab tests were normal. Her cheeks became red and flushed and she pursed her lips, then she blurted out, “So what DO I have?” I started to describe undifferentiated spondyloarthritis and how this condition can be associated with inflammation in the tissue, which may not be reflected in blood tests, and that tendons or ligaments (enthuses) are the tissues most commonly affected. I could see in her eyes my answer was not what she wanted to hear.

What did she want to hear? How I was going to fix her? What was the cause? How long would it take? What her future would look like?

In the old days I might have said something like, “This is a chronic illness. We don’t have any simple fixes, but we do have treatments that can help. In some people the condition does progress and can affect other organs and cause disability, but I can’t predict now if that will be true in your case.”

Would that have given her hope? How about you? No, I don’t think so. During the Getting Sick phase of illness, patients like this woman present in crisis and the thought of their condition being chronic triggers both fear and anxiety. My patient felt lost in the forest and was crying out for help and guidance.

Since writing You Don’t LOOK Sick! with Joy, I have come to see my most important task for patients in crisis is to create HOPE. Is there a simple formula for this? No, but I’ve learned that by listening to my patients closely and making sure they feel heard, I will find some solution for each.

Joy and I invite you to tell us how you would have helped my patient feel hopeful? If you had been in her place, what would you have wanted to hear, see or feel in order to leave my office feeling more hopeful?

We will explore elements of this conversation in future blogs. We hope a blog that invites providers and patients will create unique learning opportunities for both.


You Have a Chronic Ilness. Who to Tell, When to Tell, Why to Tell

Joy H Selak, December 6, 2012

www.joywrites.com

 

Welcome to our first blog post. This is a new experience for both Dr. Overman and me as we are both 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 our hope and intent that our book, blog and website, 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.

 

In our book, 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 experiences and lessons I believe are common to many patients who have been through these difficult passages. Dr. Steve 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 our relationships with other patients and health care providers, we will share the latest with you. For each blog, we will anchor it in the phases, the stories in the book, or to a Travel Tip, if these are 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 got sick, you are not trying to whine or complain—you just need people to know the truth of your life so they have realistic expectations of you. 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 also had 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 people you are sick, even if you don't look it. 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 immediate 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 a co-worker is depending on you, they probably need to know.

 

Social – I think in the early years of chronic illness, there is a natural desire to talk about it with friends. It’s an emotional and life altering experience; 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 appropriate 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 very 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 with emotion my telling is, the more sympathy I receive. Hope this helps, let us know what works for you in telling–and not telling.