The following excerpt by Joy H. Selak comes from the book You Don’t LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Steve Overman.
If you are reading this as a newly, partially or perhaps even undiagnosed patient with a chronic illness, I’d speculate you might look at these three steps and see them as anything but simple—perhaps obvious, impractical or impossible. If so, I ask you to bear with me, as I have been on this chronic illness journey for a long time, decades, and if I were allowed a do-over, these three steps are the ones I would set out to accomplish on the front end.
After writing the book You Don’t LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Overman, I’ve the opportunity to attend patient support conferences and receive readers’ letters from all over the country, even abroad. Learning the stories of hundreds of patients has reinforced for me the validity of taking these recommended steps. I’ve met so many patients struggling with illness to the point of despair, and yet managing their lives in ways that amplified both their symptoms and the emotional challenges of long-term illness. There is so little we can control about feeling sick all, or most, of the time. The simple steps below are within our control.
Find a Good Doctor, Get a Diagnosis and Begin Treatment
This seems so obvious, doesn’t it? Of course this is the first thing to do. But, in fact, it is a tremendous challenge and many patients give up, or go off course, before they can accomplish this vital first step. Patients who have poorly understood, chronic conditions are often marginalized by the health care profession. They are told their symptoms are ‘all in their head’, or to ‘just live with it’. They are asked if perhaps they need to see a therapist, instead of an MD. This process can be degrading and frustrating, and patients sometimes quit looking before they find that caring physician, in the proper specialty and with experience in treating their specific disorder.
I gave a talk recently to a patient support group and made the point that we hire doctors to provide a critical service, the same way we hire accountants, attorneys and other professionals. If the level of service is unacceptable, it is our job to move on. I allow any doctor three strikes before making this decision, but even so, I had to fire a few before I assembled a compassionate, collaborative health care team. After the talk, a physician came up to me and remarked, “I’m glad you said that, but you know sometimes it’s not anyone’s fault, the relationship just isn’t a fit because of personality or temperament. There are times I know I am not the right doctor for a patient, but they have to do the firing, I don’t really have that option.”
It took me 7 years to get my first diagnosis, but the doctor who named the illness was unsympathetic and ill equipped to treat it. While I was grateful to him for the diagnosis, I kept looking until I found a physician who was interested in my condition and experienced in treating it. She told me early in our work together she could treat only part of what was going on with me, and I needed to continue the search. She believed there was at least one more diagnosis in my future. That was the bad news.
Here’s the good news, I only had to find that first good doctor because it turns out the really good ones have their own little club—they call each other for advice, refer patients to each other, and share information. Find one and you have access to the others. With her help, it didn’t take long at all to find my next good doctor, get a second diagnosis, begin treatment and at last see my symptoms begin to stabilize.
If we understood chronic illnesses completely, they wouldn’t be chronic; we’d have figured out how to fix them. As patients, we need to understand that in a real sense, we are part of an experiment unique to our particular set of symptoms, and finding the most effective treatment will take time. We must work with our physicians at the complex task of finding the most effective medications, in the right doses, and align this with lifestyle changes and other supportive therapies. Once we do find greater stability, it is likely our symptoms will improve, or change, or we’ll get sick with something new and it’s back to the drawing board again. There isn’t a magic bullet.
Become the Best Patient You Can Be
The chronically ill often have to spend so much time struggling to find a good doctor it’s easy to forget the importance of being a good patient. Imagine what a compassionate doctor’s day is like. He or she might meet with one person after another who is confused, despairing or demanding. The doctor is on a tight time schedule, but patients in need may exhibit little respect for this, take more time than is allotted and leave the doctor stressed and running late all day long. Often tests are inconclusive or fluctuate from day to day and patients become angry at this lack of verification. When doctors ask to hear the patient’s story—the family history and how the illness developed—to help them solve the puzzle, patients may speak more of feelings than facts, making it hard for doctors to get the information they need. My advice to you is—Don’t be that patient. Be this patient:
- Come to appointments prepared, with current medications and supplements updated and written down in advance.
- Develop a language to clearly describe symptoms, changes in symptoms and side effects of treatment.
- Prepare a detailed family and personal history and keep accurate records including all treatments, strategies and providers and an annual summary.
- Arrive for a fifteen-minute appointment with no more than three carefully chosen questions or topics to address, in writing, with a copy for your doctor.
- Be compliant to instructions, and if not, have a reasonable, valid reason why not.
Make Peace with Your Illness—Accept It as Part of Who You Are Now
We describe our relationship with disease in terms of combat and conflict. Obituaries list the names of people who died ‘after a long battle’ with illness. We talk about how people have ‘beat’ a disease, or are continuing to ‘fight’ it. We do not begin our journey with illness looking to ease symptoms and improve our quality of life. We are looking for a cure—we want the thing to go away. I’ve met many, many patients who had been ill for years, but still began each day determined to ignore this fact. They were fighting to be the same person and live the life same life they had before becoming sick. As a consequence they were not improving, constantly exhausted and felt like a failure at everything.
Two things helped me get past this futile mindset. The first was the bell-shaped curve. I thought about what it would look like if all of humanity were laid out on the curve according to relative health. At the sickest end would be children born into poverty and filth, whose life expectancy was very short. It would include people with degenerative, terminal end-stage illness. At the most healthy end might be people from those mountain villages where everyone lives past 100, or world-class athletes in their prime. At the top of the curve, representing the average might be people who had experienced some surgeries or health emergencies and who probably had a range of illnesses from which they recovered, at least partially. You can choose your own examples.
I asked myself, where do I fall on this curve, with multiple chronic conditions, adequate health care, stable symptoms and terrific family support. I had to put myself much closer to the top of the curve, the average, than to the edge of the curve, the desperately sick and dying. What this exercise taught me is that illness is normal; it affects everyone. In the great scheme of things I’m not so bad off, so I’d best get on with life.
The second thing that helped me was grief. Once I began to consider that my illness was not going away, I would not do all the things I had planned for my life and I would never again be the person I once was, it took me to my knees. I cried and cried. For months. I feel like crying again just remembering that time. But after I let the grief come and wash over me, I came out the other side curious about who I was now, and what I could do now.
I began to structure my days to accommodate and honor this illness that was part of me. I reduced social obligations; I began to take daily rest periods and experimented with how many hours I needed to be in bed each day to enjoy the highest function. Same with exercise, how much was too much and exacerbated symptoms, in what small increments could I add a little more. I learned I needed to be home, alone and quiet, several days of the week.
Once I made peace with being a sick person, the social challenges became so much easier. I could tell people I had an illness without emotion, or not tell them at all if I didn’t want to. I began to discover I had gifts, old and new, that could still be given and developed and built upon. Today, I love my life and there isn’t much that I would change.
There are really good, practical reasons for making peace with illness, but the best reason is that until you do, you can’t discover the new life you can build for yourself and experience all of its mystery and opportunity. You can’t discover that it is possible to live well, even if you can’t get well.