Bringing comfort to our lives with a chronic illness can be very difficult, especially if the illness comes with physical and emotional pain. We might not have the energy for stress-busting activities we enjoyed before our diagnosis. We might not have any money for recreational activities after we’ve paid for our medical care, medications, and the “props” that go along with some illnesses. Very few of us can redesign our living spaces, making them easier on ourselves and our aching joints. And still fewer of us (probably) can move to a climate or geographically desirable area that will be cooler/warmer/more humid/dryer for us.
Nonetheless, as we battle those early days of our illness (and in many ways, it is a battle), we do ourselves a tremendous favor to find even very small ways to bring comfort into our illness-drenched world.
Some of the things that brought me comfort in my early days after diagnosis were seeminly ordinary, but very powerful. A blooming houseplant that I could admire from the “comfort” of my living room sofa. The play of fish in my aquarium (also observed from my sofa). A new, softer pillow. A taste, however small, of my favorite food. Reading from a few pages of the comics that never failed to make me laugh. A gentle walk on a shady street. A few moments of meditation on one of the many comforting psalms.
One of the most comforting things for me was, and still is, refocusing my eyes, mind, and heart to only the now. “Checking in” with my breath, heartbeat, and giving special, relaxed attention to anyplace where I might have worry or carry stress.
We don’t have to spend a lot of money or completely redesign our lives to bring comfort to ourselves after a harsh diagnosis. We can find it nearby, within our hearts, and it will have as much, if not more, of a positive impact upon us as we nurture it today, now, and in the days to come.
Allowing people into our life with the diagnosis of a serious chronic illness is an important step to building the support system that will sustain us and provide us with a way to “give back” to the goodness from which we benefit. This can be very hard, especially if we experience loss among the social circle we had previously relied upon. But even as we feel a deep sting, a kind of betrayal, from so-called friends who turn away from us, we are probably better off if we discover our true friends sooner rather than later. Chronic illness is just that – chronic, ongoing — and if someone cannot stand being around us in the early stages, just after diagnosis, their negative influence can have a deep impact upon us, our life, and our spirit moving forward, too.
It helped me tremendously to focus my limited social energy on people who truly cared. I realized I couldn’t control people’s emotions, nor could I be a kind of therapist helping someone “deal with” the way my life had to change. So, as much as it hurt, as as often as the tears did fall, I turned more firmly to only a few friends, a few people whose emotional capacity was deep, comforting, and positive. And, I turned to God.
Of course, I’d always had a profound prayer life, a deep faith. But in the early days of my diagnosis with lupus, I carried on a running dialogue with the Creator, sometimes running out of specific words, never running out of the desire to bring Him into the exam room, the pharmacy waiting line, the wig shop – everywhere. Thus inviting God into all parts of my life, He opened others up to tremendous, lasting friendships with me, too. And these, added to those who were with me before and after the diagnosis, have made for a rich, inspiring, and wonderful social circle!
It is crucial to invite at least one very positive person into your immediate life after diagnosis, even bringing him or her into a doctor visit or two. We need not face chronic illness alone. And as we find those true friends to accompany us, and God to give us inner strength, we will find ourselves on even firmer footing for the journey ahead.
As you begin to find answers to your questions after a diagnosis with a chronic illness, you and your doctor will be working on fine-tuning your condition and setting up an approach for treatment and follow-up. I discovered quickly that my life changed drastically – from social and professional appointments I went into days when medical tests, procedures, and doc appointments dominated my waking hours. It took a long time to understand all the ramifications of my diagnosis, and there were stops and starts along the way. Each person reacts to medications, for example, in a slightly different way (especially when they are combined in some treatment regimens). I sometimes felt as if I was talking with my doctors more than with family and friends!
All of this, of course, can be stress-filled and exhausting. All the more reason, I found, to carefully and tenaciously guard times of rest and reflection.
One of my favorite meditations in my book, Peace in the Storm: Meditations on Chronic Pain & Illness, is about using the metaphor of an athlete in training for life with chronic illness,. No better time to begin than in those early days, just after the diagnosis, when all things health come to the fore and dominate our days.
Key to the image of an athlete is, of course, high performance. Being alert, ready, and fit are hallmarks of an athlete who can achieve great things. So it is with us, too, as patients – being alert to how our disease is manifesting itself so we can report symptoms promptly and clearly to our docs, being ready to communicate what’s going on with us to our loved ones and medical team (taking notes is especially helpful), and being fit for the tests and tasks we have to do to protect our health (guarding our time for rest and recouperation).
We might not be athletes in the traditional sense – not able to run marathons, for example. But we do run hurdles as we take each test, each flare one by one. We do call upon inner stamina and grit to get to the end of long days. And we do use imaging of our own, thinking of what we can positively do to help ourselves be as strong as possible.
Yes, imagine that! We are athletes – and we are strong!
Life with chronic illness tends to go through stages, and probably the most difficult one is when you first leave the doctor’s office with a diagnosis. Perhaps, at first, you feel a bit of relief. Finally, you might exclaim, there’s a definite name for what I have!
But then, as the news sinks in, you might find yourself frozen with questions, such as:
What does this diagnosis mean?
How will my life change?
What else might happen to me?
How can I live with the new constraints/expenses/pain?
Is this diagnosis real?
I quickly realized, when I was diagnosed with lupus, that I couldn’t find answers to all of my questions all at once. In my book Peace in the Storm: Meditations on Chronic Pain & Illness, I liken this phase as much like peeling away the layers of an onion. It’s hard, brings tears, and takes time to get to the core of all it will mean.
But as confounding as this stage might be, it is also a hopeful (yes, hopeful!) time. Where once there was a mystery, there is now some kind of path to a definition and perhaps treatment. More than ever before, there is information available to us to learn about our diagnosis and all that it might mean (or not mean) to us, personally. Also available is the possibility of a second opinion (which I pursued when one rheumatologist first said, “I think you have lupus.”) Especially if you are wondering about the validity of the first diagnosis, a second opinion can make the situation more definitive still.
Above all, it’s important to write down your questions and take them in to your doctor appointments. As each question is answered, or at least addressed, you can move to the next, thus “unfreezing” yourself from the rigidity of feeling overwhelmed with only questions and no resolutions. Also, as I discovered, as questions are answered, life does move ahead. It becomes more possible to start to adapt to new and more healthful lifestyle habits. It becomes more possible to see light and feel God’s comfort.
When we’re first diagnosed, we might have all sorts of questions. But we don’t need to be frozen by them. Peel them away, one at a time, and be encouraged that you are farther along than you were before your doctor said, “You have…”