The prison of chronic illness

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In my years of psychiatric practice and my following years of illness, one problem has appeared unsolvable. How does someone who is chronically ill (me included) build a happy life?

The usual recipes for happiness simply do not work if your life is marked by continuous illness. The obstacles of disease will sabotage plans taken from normal life. So, how do you advise someone whose life has been brought to a halt by illness on how to build a new, contented existence? Is there a different recipe for the chronically ill?

Chronic illness: physical and mental dimensions

So, what and who do I mean by chronically ill? What are the limitations of being ill, and how do they thwart the usual formulas for happiness? And, finally, is there a way around these barriers?

The diseases I have in mind are things like rheumatologic disorders (severe arthritis, such as rheumatoid arthritis and Lupus), neurologic disorders (multiple sclerosis, degenerative diseases), severe mental illness (when severe, almost any mental disorder fits here), injuries that leave you impaired and in pain, cancer, and other severe medical conditions, such as organ failure (congestive heart failure, kidney failure, liver insufficiency, significant breathing impairment, etc.).

When serious enough, these illnesses have something in common. They leave you greatly diminished. This can be forever or for long stretches that will undo much of your life. There is less of all of you, not just a bad bone, back, or blood test. You can no longer get up in the morning and go out to live your plans. Work, taking care of yourself, having regular personal interactions, and, lastly, some frequent enjoyment become parts of your past. This is not normal aging or the physical limitations that many people face. It is a fundamental change in all of your life. A change that shrinks your world to a lesser version of everything you knew.

People will compliment your fighting spirit. You are brave and heroic and have amazing coping skills. But it rings hollow. In reality, you tread water very well. Or, perhaps, you are told it’s the journey, not the destination. But the sick already have a journey; what they want is a life.

You work hard to get better, go to doctors, take medicines, and do rehabilitation and psychotherapy. If you’re in this group, you know that this work is never done.

What troubles me most about these situations is wherever I look for advice on building a happy life, these unlucky souls are not included.

Finding happiness in sickness and in health

Such advice is generally based on either finding meaningful activity or having strong connections to others. How does one do these things when isolated and disabled from chronic illness? Trouble walking, shortness of breath, persistent pain, problems with mood and thoughts, or the low energy that is almost universal in this group make even brief tasks quite difficult.

For meaningful activity or connecting to others, you need to be places on certain days, at certain times, and for a certain number of hours. Sickness knows no such schedules. Bad days appear when they will.

If lucky, you have folks who will visit. But these are visits to your life; they are not in your life the way immediate family members, coworkers, and others you may see and talk to regularly are. While such visits are greatly appreciated and enjoyed, they do not constitute the full dimensions of a social life. Being in someone’s life means knowing the ins and outs of their days. The catch-ups that occupy many visits are not needed in these connections.

Another common obstacle to happiness is depression itself. This is very often a part of the sickness process. But if we look at research about impediments to recovery from depression, we find that people who are in pain, chronically ill, disabled, or isolated all have difficulty recovering. The sick are often all of these.

Of course, sometimes things come together, and a different version of life takes shape. People find a place for themselves, maybe some work that is doable and meaningful. I am not sure how often this happens, but such experiences are not the rule.

Step 1: Build back a version of what you had

So, what are some guidelines for happiness for the sick? The first step is to build back a version of what was lost. This entails calls and emails to invite friends for a visit. As stated above, this will not be a full replacement for a social life, but without connections, people wither and become depressed. In addition, activities to pass your time with a modicum of interest or enjoyment must be found. Time passes very slowly without things to do.

The burden of rebuilding falls squarely upon the chronically ill. A life must be built brick by brick. But as discussed above, this is not enough. There is more work to be done.

Step 2: Acceptance as a necessary bridge

The next step is the work of acceptance. It is hard to underestimate how deeply we can reject the reality of our lives. Emotional acceptance of circumstances is not assured by the passage of time. There are, of course, many ways to walk this leg of the journey. Religions have ways to approach this, but many people find their own paths. This work is an ongoing process. Grieving losses such as your own health, work, and social life can be a lifelong process.

Acceptance is a bridge to the next step. This is because the flip side of acceptance is letting go of the burdens of normal life. By accepting your plight, you also allow yourself to participate less in worldly goings on. This frees you to spend time as you like.

Step 3: Building a bigger internal world

This brings us to the final and most important step: building an internal life. Normal life is lived in the world. It gets bigger as we do more, grow our skills and relationships, and expand our horizons. Chronic illness ends this.

As your external life grows smaller, your internal life must now expand. The path is lit by wonder, amazement, curiosity, and interest. Find what amazes you and begin there. This might be revisiting things that were fascinating in school but you could not do more of. Or perhaps you are learning something you have always wondered about. An art, craft, skill, a secret story to follow, or a new one to tell.

In my case, I took up portrait painting (something I never would have imagined) and studied areas of science that I loved in school but did not have any role in my job as a psychiatrist. Each time I begin one of these, I am excited about what I will discover. They are new worlds for me.

How does a chronically ill person find this? The way is to ask what amazes you. What makes a small smile appear on your lips, not because it is funny but because it is beautiful and amazing, incredibly interesting, beyond understanding? Then open a book, a web page, or whatever tools you need. A daily meal of what expands the horizons within your mind becomes the guiding path of your new life. The more something astonishes you, the more space it will open within you.

There is no one you must help here, nothing to build or express. No homework. No reports. No schedule or tasks to do. You do it just because it amazes, excites, piques your curiosity. This is enough and has been the driving energy behind the most incredible lives. This is when you exercise the flip side of acceptance and excuse yourself from needing to achieve something other than to be very interested.

Will this lead to other things? Maybe. But the point is, it does not need to. It will be just you and a happier you with a spacious inner world to explore.

The chronically ill build a happy life by constructing a version of normal life, finding acceptance for a new self, and, most importantly, expanding their inner life. You can reside in a small part of the external world but have endless room to roam in what delights and astounds you.