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…”
Soon, the air will be filled with Christmas and other holiday music! As someone who loves to sing and enjoy music, these coming weeks will be especially melodious. But even with the joy of music, I know that sometimes an uplifting tune might not exactly fit in with the experience of chronic illness and pain, which know no seasons or holidays.
During the “regular” part of the year, I have all sorts of favorite songs and musical artists. From classical to ethnic to country to all-Christian of all-different styles, I like to listen to certain songs at certain times. Much depends on how I am physically feeling, and of course emotionally feeling. During Christmas time, I have certain favorites, too – and sometimes, during the hot days of summer or the long, dreary days after December, I play them and let their melodies lift my spirits or bring out a certain melancholy that needs to be coaxed and comforted.
As we turn to the radio, Internet, or our own private musical collections, we can make use of the power of song at any time of year, but especially in the coming months.
Yes, music can help, heal, and hearten. All it takes is the right kind of song!
I learned yesterday that a friend died in October. I knew she was very ill. She had reached out to me for moral support, and I had visited her twice in the hospital only a few days prior to her death. But although I asked a family member to keep me posted on her condition and explained that I was willing to help in whatever way I could, I never heard another word after giving that family member my contact information. Even during my visits, she was unable to communicate much, and the family closed around her and never reached out to me afterward. I learned of her death from a Web posting after I did a Google search.
When a family member is critically ill or dies, the family is usually very close to the situation. But in the case of a friend, the boundaries and lines of communication can be less instintive. This doesn’t mean friends aren’t important; in fact, for many adults, friends are in some ways closer than distant or even geographically near family. I’m not talking about romantic friends, but rather those friends we gain through work, college or grad school, church, or social activities. In the case of the friend who just passed, we had known each other for 20+ years through playing tennis, and even when we weren’t playing because of my health or her work commitments, we still kept in touch. Yet, een in the case of a long friendship, the role of a friend can be cut short if family decides otherwise.
Learning of my friend’s death so soon after my last visit was a shock, especially the way I learned about it. And it feels odd to shift gears from wondering how she is and hoping the family will reach out to now, remembering a friend who has passed and knowing my help will not be needed. But the past is past, and remember I will – and not hesitate to answer other friends’ calls when and if they need my support.
Especially for those of us with serious illness, death will at times punctuate our relationships. In thinking about this entire situation, I of course understand and respect the role of family, especially in caring for someone who is terminally ill. But I also think it is important for family members of adult relatives to understand how broad someone’s network of good friends can be, and how much we as friends want to be supportive in good and bad times. And afterward..We as friends mourn, too, and a little bit of consideration can go a long way in helping the healing process to move ahead smoothly – for family and for friends.
“It’ll take awhile to clear up.”
“The time it takes for the med to begin to work varies, depending…”
“You might have more pain for awhile before your symptoms subside…”
“Rehab results might take a bit longer…”
When I moved squarely into the world of chronic pain, I learned a hard lesson very quickly: “Time” varies, and is seldom a realiable measure of how our lives with pain “feel.” Our docs do their best, but with each of us patient so very different, with distinctly different symptoms, treatment regimens, lifestyles, and stressors, the best of medical teams can often be unable to estimate how long symptoms will last, the duration of acute pain, and the ever-important “Will I ever be completely pain free?”
Given there is so much, then, that we and our docs do not know, I’ve given up trying to figure out the duration of any symptoms or flares. Rather, I’ve re-imagined how I measure time, beginning with the here and now (a step we often skip over completely when thinking about the trajectory of our pain). So, I take stock of how I feel immediately and then move forward with whatever I and my docs have decided is the best way to proceed (make the PT appointments, get the refill, do the stretches, etc.). This way, I acknowledge the pain I am feeling and I take pro-active steps in the present to fashion a future that has the possibility of bringing relief… or, at least, progress.
Inch by inch, day by day, I move ahead, then, always acknowledging the present and paving the future with some concrete stepping stones. I might not know the full extent of how the days will unfold, but at least I’m not leaving the entire block of days on a calendar up to chance (and the whims of a strong-willed pain syndrome!). Being more present in the present also takes away the dread of facing indeterminent time periods of continued pain. It’s very different to breathe through “now I hurt, but I’m setting up some positive, helpful things for the future,” than to tense up in the present because I’m wondering what future days will hold (and dreading there will only be pain).
It also helps to keep a pain log, which can show how long specific levels of pain have lasted and thus better inform our docs and physical therapists as to what they might suggest to help matters improve. Long days of great pain have a way of clouding our perception of the passage of time, but a log can help us gain clarity when we most need it.
The most important thing to keep in mind is that time does pass – and we do well to help ourselves through it, gently, with good counsel, and in faith!