Like most people who have been relatively healthy all their lives, I never expected to end up with a chronic medical condition. But about 5 years ago my health took a definite downturn as I developed nonspecific symptoms -- physical exhaustion, insomnia, muscle weakness, and many others -- that defied any clear medical explanation. I was forced to drastically reduce my work hours and give up most of my social life. At home I struggled to be the dad and partner I wanted to be, as I couldn’t even keep up with my wife and young kids on our family walks.
It’s not easy to adjust to our health challenges, including the emotional struggles. We might feel depressed about our loss of function, terrified that we’ll slip further into disability, envious of those who are healthy and strong, ashamed of our limitations, and angry that we can’t find a solution. These feelings are normal and understandable as we face a new reality and an uncertain future.
While I’m doing much better now than I was at my worst, I continue to live with daily symptoms and limitations. The struggles I’ve had in coping with my illness are similar to those I’ve witnessed in loved ones and patients who experienced long-term health problems. For many of us, the hardest part of adapting to an illness is the loss of identity. It can be hard to recognize the person you’ve become due to a longstanding illness. I wasn’t used to having my weaknesses and limitations be so apparent. I used to be full of energy, but I now need a nap every day, struggle at times to walk up one flight of stairs, and often have to turn down invitations from friends and family. It’s painful and disorienting to lose the person we’ve always been.
Let Yourself Grieve
Grief isn’t just a reaction to losing someone we care about. We can grieve any loss, including our health. Allow yourself to feel the pain and sadness that come up for you. Chronic illness costs us a lot, and it’s OK to mourn those losses.
It may be especially important to give yourself permission to grieve if you’re typically a grateful and optimistic person who looks on the bright side. Finding a deep appreciation for life doesn’t mean we can’t acknowledge our grief, anger, and sadness. There’s a time for everything, and for every emotion we feel. If you’re angry about the injustice of it all, let yourself rage. If you feel like crying, allow yourself to weep. Being open to our emotions allows them to flow through us, rather than being bottled up inside us and then emerging in unhealthy ways.
Mind Your Mind
Early on in the course of my illness, I was tormented by thoughts about my health and my self-worth. My mind told me that I wouldn’t be able to work, that we would lose our house, that I was a loser for having these struggles -- even that my family would be better off without me.
Be on the lookout for unhelpful thoughts like:
- Self-criticism: It’s my fault that I’m in this position.
- Catastrophizing: I’m never going to enjoy my life again.
- Fortune telling: Today is going to be terrible.
- Mind reading: My partner thinks I’m pathetic.
It’s easy to mistake these stories for reality, and wind up living in a fantasy of the mind’s creation. You don't have to convince yourself that everything’s going to be OK -- that would just be another story. Instead, practice recognizing thoughts for what they are: mental activity that may or may not be true (adapted from The CBT Deck for Anxiety, Rumination, & Worry).
Open to Your Experience
Many of the people I’ve treated who were dealing with a chronic illness were trying to push away their experience, to resist the reality of their health problems and say in one way or another that “this can’t be happening.” I definitely understand this impulse. Why would we accept unwelcome struggles?
And yet it isn’t helpful to deny our experience. Our most creative solutions to any problem start with accepting our situation for what it is. Acceptance is the only path to genuine peace -- a peace that transcends the turmoil and pain we’re experiencing. We can realize, even for just a moment, that we can drop the struggle. We can be in our experience exactly as it is. We can open to it with courage and curiosity.
Accepting our illness doesn’t mean we have to like it or prefer it, but we acknowledge that this is where we find ourselves. We can include in our acceptance the frustration we feel at times, acknowledging that we’re heartbroken or furious. Acceptance is a real and raw response to reality, not pretending we’re indifferent to our situation.
Part of opening to our experience is letting go of “shoulds,” like, “I should feel better by now.” For the first few years after I got sick I constantly told myself I should be in better health. But our shoulds are just stories that may not align with reality. While they express our wishes, they don’t change what’s true for us right now. When we release our shoulds, we can find more flexibility in how we cope with our limitations.
Live Within Your Limitations…
For most of us, having a chronic illness will require us to cut back on certain activities. We may not be able to exercise like we used to, spend as much time with friends, or work the same long hours. These limitations are frustrating, and can lead to all-or-nothing responses --either insisting that we do everything we used to, or acting as if we can’t do anything. If we’ve been a lifelong runner, we might try to keep up with our same regimen even if it’s too exhausting for us; or, we might decide we won’t exercise at all if we can’t do our normal routine.
A more balanced approach lies between these extremes. We may not be able to hike for hours like we used to, but maybe we can still take walks with our family. Perhaps we can no longer walk in the heat of the day, but the cool of the morning is still available to us. As much as you can, find ways to do the things that bring you joy by making any necessary accommodations. There are many evenings in the summer when I can’t manage the walk to the pool with my family, but I can drive there so we can still enjoy that time in the water together. The emphasis in living within your limitations is on living.
… Without Letting Them Define You
While it’s important to respect your limits, it’s even more important to see beyond them. Chronic illness might shrink your life in certain ways, but it can’t diminish you. No matter what you’re dealing with, there is a part of you that is untouched by any physical ailment. Spend time every day connecting with that part of yourself by taking slow, easy breaths and being the observer of your experience -- the one who witnesses your thoughts, emotions, and actions.
We might even discover in these moments of deeper connection with ourselves that our struggles and pain are but another aspect of being alive, and paradoxically, maybe even a privilege to experience. We are acquainted with a wider range of the human experience than we were before our illness.
We might not have chosen to have these problems, and yet on some level we can know that our life is richer because of them. We couldn’t be the person we are without the challenges we’ve faced, or grown like we have without the suffering. This insight isn’t cheap or easily reached; it arises as we become more familiar with the complexity of suffering.
With a broader perspective we can realize that there are gifts hidden in our grief, and that the ending of life as we knew it is always the beginning of something new. As you adjust to having a chronic illness, stay open to where this is leading, and allow yourself to discover the new creation that you’re becoming.
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