Introduction
As if dealing with a debilitating chronic medical condition is not grueling enough. Your unremitting, tormenting chronic illness drains your time, energy, and ambition, impacting all aspects of your life. You find yourself in survival mode and inevitably confront a flood of negative thoughts and emotions ranging from shame and guilt for not doing more to feeling like you are letting others down to internalizing judgmental criticisms from others. In so doing, the person you seem to fight the most emotional battles with is yourself.
Thanks to your illness, you also struggle in relating to others. Friends, family, co-workers – or even your healthcare professional – question the severity of your condition and offer recommendations ranging from “Stay positive” to “But you look good” to “Try this ‘cure’ for your ailment.” This well-intentioned, but misguided advice only compounds your misery, making you withdraw.
On top of that, accessing and maintaining high quality medical care for your condition poses its own sets of challenges. You may have more questions than answers about your illness. You may not be sure how to make the most of your brief appointment. You may not have a team of doctors working together on your behalf. Or your doctor may not be well-attuned to your specific needs.
It does not have to be this way.
You can take ownership of your physical and mental health, your relationships, and your life. You can stop negative thoughts and emotions in their tracks. Your relationships matter and, while you may not be able to control what others say to you, you can still enjoy satisfying relationships. You are not only worthy of respect from others, but from yourself as well. And you can obtain clarity on your medical condition and access quality medical care to manage it.
In short, you can take an intentional, holistic approach to managing chronic illness, while not letting it overtake your life. By changing your thoughts and actions, by cultivating your relationships, and by taking the right steps toward understanding your condition and accessing quality medical care, you can change your life. Finding Joy will show you how.
Your Invisible Chronic Illness
Your situation and thoughts are different. A chronically ill person must think about that which the healthy person does not have to.
+A patient with Ehlers-Danlos syndrome (EDS), a connective tissue disorder in which the joints demonstrate an unusually large range of movement, aches endlessly with chronic muscle pain and fatigue.
¨+ A patient with chronic obstructive pulmonary disease (COPD), a progressive lung disorder marked by inflammation and obstruction, suffers continuously from chest tightness, shortness of breath, and coughing.
¨+ A patient with Crohn’s disease, a type of inflammatory bowel disease (IBD), agonizes indefinitely with painful cramping and bloating.
¨+ A patient with empty nose syndrome (ENS), a nasal breathing disorder resulting from aggressive nasal surgery, suffers ceaselessly from a sense of breathlessness, hyperventilation, and suffocation.
In contrast, a healthy person need not devote any time thinking about their joints, lungs, bowels, or nose. For such a person, these organs will simply continue to operate at full capacity without any conscious effort. Such a person can forget about it – forever.
Now, 1 in 2 Americans (around 165 million) have a chronic medical condition, in which their illness impairs them in one or more of their everyday activities.1-2
Further, 96% of chronic medical conditions in the United States are invisible, making them both harder to diagnose and for others – family, friends, and healthcare providers – to understand.1 As a result, because others tend to assume what we can or cannot do simply by how we look, they tend to downplay this suffering, and assume we are either lazy, irresponsible, or even faking our illness.
Because of this difficulty in diagnosing and understanding an invisible chronic illness, delay in diagnosis is the norm, particularly for rare or poorly understood diseases. Considering the serious impact these conditions have on quality of life and, if left untreated, the increased potential for organ damage, any delay in diagnosis can have severe negative effects.
Don’t despair. Finding Joy will show you how to seek answers about your condition, how to assemble a team of healthcare professionals working on your behalf, and how to make the most of your doctor appointments. These, in turn, will empower you to access the quality healthcare you need and deserve.
Our Mental Health
In addition to the exhausting physical ailment itself, the chronically ill face an onslaught of stressors: financial hardship, diagnostic clarity, and frequent misunderstandings from others. These stressors, in turn, impact our moods and emotional well-being.
Chronically ill patients often experience anxiety over the financial difficulties of paying for basic necessities and medical care as well as over their loss of autonomy and control over different body parts. They may not be able to work, and the government may not officially recognize them as disabled or, if they do receive compensation for their disability, it may not be sufficient.
Many go from doctor to doctor seeking a proper diagnosis and adequate healthcare. Meanwhile, until confirmation of a diagnosis (and even after), they confront common misunderstandings – invalidation, judgment, and even rejection and/or abandonment – by family, friends, and medical professionals. In an attempt to fit in, many put on a façade to conceal their suffering from others, even those closest to them.
The end result? Chronic illness, financial hardship, diagnostic confusion, and impaired relationships undoubtedly impact a patient’s mental health, with one-third of chronically ill patients experiencing depression.3
It is not hard to imagine how chronic physical illness can cause depression. Patients must make major life adjustments, and usually experience loss in energy, abilities, relationships, and productivity. They have lost the life they once knew; and the more fulfilling life they enjoyed before their illness, the more difficult it is to adjust after their illness.
This depression, in turn, can exacerbate the physical condition. Depression can prevent the patient from successfully treating the disease and can contribute to additional physical ailments as well. Consequently, the physical illness’ adverse impact on emotional well-being creates a vicious, downward cycle.
Consider the psychological burden on patients with ENS. A 2018 study of 53 ENS patients suggested that greater than 65% of the ENS patients dealt with clinically significant symptoms of depression and anxiety.4 Additionally, the subjects reported a 62% reduction in productivity at work and a 65% reduction in activities of daily living. According to Dr. Subinoy Das, an ear, nose, and throat (ENT) specialist who treats patients with ENS, 3% to 5% of patients with ENS commit suicide.5
Clearly, these estimates show an invisible chronic illness can wreak havoc on the psychological well-being and quality of life of its sufferer.
The good news is that depression is highly treatable. Your thoughts and actions exert a tremendous impact upon your moods, and Finding Joy provides clear, targeted advice on how to change them. If that’s not enough and you need professional assistance, Finding Joy explores various psychotherapies that can help.
When Medical is Viewed as Merely Psychological
You have a medical condition. I believe you. They may not. Some healthcare professionals who do not understand these complex physical conditions may mistakenly view them as psychosomatic – that the mental state of the condition contributed to or caused the actual physical condition. In this respect, they confuse cause and effect, believing the psychological caused the physical condition when it is in fact the other way around. This is how healthcare professionals have traditionally viewed many physical illnesses such as chronic fatigue syndrome (CFS), fibromyalgia, Lyme disease, and ENS.
Do not worry, though, the truth – which is first ridiculed and then violently opposed – will ultimately be considered self-evident. You might just have to wait a little while – or many years. But you should not have to and do not need to wait that long. That’s why Finding Joy was written – to help you cope with your chronic physical illness today.
Again, consider that ENS – like the other physical conditions just cited – is primarily a physically debilitating condition. Nasal surgery involving excess removal of, or damage to, the nasal turbinates causes ENS. The turbinates are the organs of the nose that heat, humidify, filter, direct, streamline, sense, and pressurize airflow, while also providing 50% to 75% of the airflow resistance to the lungs. ENS researchers cite turbulent nasal airflow and nerve damage as the physical origins to ENS.
A 2015 meta-analysis indicates that a surgical nasal implant substantially improves the physiological and subsequent psychological well-being and quality of life of ENS sufferers, thus providing further evidence of the physical origin of ENS.6 So while there may be clear psychological needs of patients with ENS (and all other invisible chronic illnesses), it is dismissive and unhelpful, if not harmful, to ignore the actual physical needs of such patients. Dr. Das refers to this attitude of dismissiveness as “double victimization” for ENS: the patient is not only victimized by an overly aggressive turbinate surgery, but is then told that their symptoms are merely in their head and can be cured through behavior therapy.7
The Answers that Can Help You
Now, although invisible chronic illnesses are of a physical origin, both the physical and psychological needs are still real. We must address both for optimal health.
While we may not be able to control all aspects of our disease or even its trajectory if it is progressive, we can control how we respond to it. In so doing, we should try to strike a balance between being too controlling or obsessed and too defeated or complacent. Easier said than done, we must aim to manage our illness and our mindset in an intentional, focused manner without letting it control our lives.
Consequently, the questions for chronic illness sufferers become:
1. How can you think and act differently when chronic illness causes your world to crumble?
2. How can you embrace those good thoughts and feelings and halt a seemingly endless flood of negative thoughts and emotions?
3. How can you enjoy life and de-stress in the midst of constant, unremitting physical suffering?
4. How do you cope with loss and/or depression resulting from a chronic illness?
5. How can you improve your relationships with others and even find support on your journey with chronic illness?
6. How can you respond to the naysayers and possibly even help them to understand you and your illness?
7. How can your loved ones show they care and truly support you and build you up?
8. When seeking medical care, how do you go about seeking diagnostic and prognostic clarity and accessing quality healthcare?
9. What are the most critical dietary considerations that can help you?
These questions deserve thoughtful, informed answers. Finding Joy offers just that.
Me and My Illness
I understand the self-blame, relationship impacts, and difficulty accessing high quality medical care all too well. I have multiple invisible chronic illnesses: my diagnoses have included ENS and then allergic rhinitis and chronic sinusitis and, 10 to 20 years later, a primary immune deficiency disorder, sleep apnea, asthma, and bronchiectasis.
These conditions have been, and continue to be, challenging in my life. Yet because of outstanding medical care, extensive self-educating, a supportive family, and most importantly, striving to follow the principles set forth in this book, I have effectively managed my invisible chronic illnesses. Although not cured, I feel great joy and gratitude in my life – and I am confident that my superb mental health is facilitating enhanced physical health.
As a school psychologist, chronic illness sufferer, and Christian, I integrate my personal and professional perspective, while backing up associated claims of efficacy with an evaluation of the scientific research. I personally believe that my faith and science go hand in hand, with science showing me how God works. While the central emphasis in this book is integrating positive psychology with communicating, thinking, feeling, and behavioral approaches, it would be incomplete to share what is beneficial for coping, but deny the spiritual aspects of my journey. I do not want to leave you hanging.
There is one caveat, however, as an overly rosy portrayal of a chronically ill patient can be misleading and blatantly dishonest, like someone trying to show off their perfect life on Facebook or Instagram, while tucking away the skeletons in their closet: my chronic illness can, and often does, creep up at any moment and rob me of my energy and physical health. When this happens, it does not mean that the medical field has failed me, I am not a positive person, or I do not understand key strategies for good health. It simply means that I have a chronic illness.
Conversely, on a personal note, my chronic illness has strengthened and rooted me in my faith. Having a chronic illness and the many kinds of trials it has entailed, has cultivated a humble, compassionate heart within me and has helped me to depend on God in my weakness, while recognizing the rampant perils of pride, judgment, and petty squabbles. In fact, I think most people with a chronic illness are less likely to overreact to small problems, which are seen as less important or more trivial, and they have become less judgmental as well.
Nevertheless, it is understandable how unrelenting pain or stress associated with a chronic illness can lead to discouragement, despair, and an overwhelming sense of helplessness or hopelessness. I have felt these emotions, too, and my heart goes out to those suffering with little relief in sight.
Yet after twenty-four years of dealing with multiple disabling chronic illnesses, I have learned much along the way, I have reason for great hope, and I am pleased to explore and examine those key elements – on a personal and professional level – that can buoy you from deep discouragement or despair to overflowing with gratitude, excitement, and joy.
It is my deepest hope that you, too, no matter what trial, chronic illness, or circumstance you may be facing, will find acceptance, gratitude, hope, and joy in your journey.
As the great American Theologian Albert Barnes said: “We can always find something to be thankful for, and there are reasons we ought to be thankful for even those dispensations which appear dark and frowning.” Unique and unprecedented opportunities and silver linings abound in dark times, and that could not be truer when it comes to living with a chronic illness.
