From a Place of Love and Bearing Witness to Illness
MINDFUL ILLNESS, MINDFUL CAREGIVING
Yasemin Yamodo-Isler
Originally Published on Jan 30, 2019
An open invitation, as we consider being present to people in the midst of an illness.
Let go of your needs. This is about them,
how you can be present for the person in your life living with an illness, or their caregiver,
how to truly support them,
how to show up for them,
what they may need,
meaningful from the perspective of the ones who are in the midst of suffering.
Having been through my own experiences with illness and caregiving, and hearing from others in similar situations, the common thread is the appreciation for human connection and compassion. Most of the time, the person who is in the midst of the hardship is too consumed by the experience to speak their truth and express their needs. They spend their energy on supporting themselves and their loved one, a Herculean effort that they most likely do not disclose.
It is hard to bear witness to another’s suffering, especially if one is not equipped with compassionate resilience. It is nobody’s fault, just the way it is for some. The good news is that it can be learned. May we all continue reaching out with courage, vulnerability and compassion to those who are near and dear, and those who are far.
With love and kindness,
I am reaching out after much reflection. I am the parent of a child who’s going through a rough patch of illness. I also live with a chronic illness.
I could be anyone who is living with a challenging illness, or giving care to a loved one, staying strong and vulnerable, wishing for healing, ease of pain and suffering.
We are strong in our perseverance and positive outlook in the midst of hardships. We keep our belief that healing is happening. We witness the gentle frailty and surprises of life up close, allowing this wind to pass through. We recognize that we have enough resilience to pull through the day. We listen to the wisdom of the body, knowing it has healing capacities within. We take care of ourselves. We see the doctors who may help us. We witness that some illnesses are not very easily curable. We also notice how easily a tough illness brings isolation to those who bear it and their immediate family member. We are grateful for those who show up to support us. We wish for healing. We savor life’s joys, in the midst of adversities.
What we ask of you is your Presence.
We do Not need:
- “Feeling sorry for you”s,
- “Poor you/him/her/them”s,
- “That’s too bad ”s,
- “How awful”s
because those are sentiments of pity, and pity only makes us feel worse.
Pity divides us. It arises from the misguided belief that some people are destined to be sick or suffer. It blocks the truth that anyone can get ill at any time. We need to move to compassion to connect back with our common humanity. There’s a chasm between pity and the healing power of compassion. In the chasm there’s a wobbly and mighty bridge, too, with the first step being empathy, followed by gestures of kindness and compassion.
We need empathy to remain humble and human, away from the pedestal of pity. Empathy helps with recognizing and feeling the pain of another, putting ourselves in their shoes, to awaken our hearts to move in the right direction. But when a person gets stuck in that wobbly bridge of empathy, feeling the pain of another, not knowing how to direct that affinity towards an action, there will be overwhelm. The pains become too much to bear, causing empathetic distress. That is why people may turn their back, remain in pity, or keep a distance. Empathy is needed and then it must move into action.
Compassion connects us back with our common humanity - possibilities of suffering, shared experiences - where we can feel the other’s suffering and then act to support them to alleviate that suffering. Research shows that even when we cannot do anything, becoming aware of the other’s suffering, distinguishing that this is their suffering and not ours, and wishing for it to ease, is less depleting than remaining in empathy alone. If you can act with compassion, of course, do that, for their and your benefit.
Compassion gives resilience to both the giver and the receiver. It awakens our courage and vulnerability at once and opens us all to healing. When one gets stuck in pity or empathy or sympathy, these only drain the receiver or the giver or both. We don’t want anyone to feel depleted.
Here’s what Persons Living with Illness, and their caregivers, want you to know:
We do Not need:
to worry about you “feeling overwhelmed” for yourselves and to see you avoiding us. May you be kind to yourselves while you get over the overwhelm and remember that we are the ones going through the real hardship. If you feel like you are walking on eggshells, please do not put the burden on us; there may be work needed on your part.
We do Not need:
to be brought into your brain storming about what can be done to support this illness, or what we should be doing, or whether we tried this or that already. You need to trust that we already are taking care of ourselves, to the best of our abilities and within the limits of an illness. We do not need to be patronized or doubted, in the service of you trying to make sense of a seemingly impossible situation, in the midst of all we are dealing with already. We cannot afford to spend our limited energies explaining what we already know. Do not wonder out loud, bringing us into your brain storming.
We do Not need:
fixing, or attempting to fix, what you cannot fix;
being lectured on what we should or should not do.
We need:
you accepting what is here for us, and showing up with courage;
you not to attempt to fix our situation, but to stand with us amidst the situation.
your recognition of what we are already going through, and bringing a compassionate support if you can:
Ask how you can be here for us. Do the things that we need/ask for and we have decided will help us.
Reach out and check on us often, without expecting that we may always be able to answer.
Listen to us when we speak, without needing to respond or give advice.
You are not being asked to solve our problem. You are needed as a human being bearing witness.
If you are interested in our well-being and care, spend some time to research on your own to learn about the illness so that you are familiar at some level with what we are going through.
Visit, often or at least once in a while.
You are not expected to be superheroes, only loved human beings staying with us in the midst of the storm, sharing our common humanity, where eventually no one is spared from some form of suffering.
We wish to matter, during our challenges and celebrations, as you equally matter to us.
With Love,
Yasemin Yamodo-Isler
Yasemin Isler is a mindfulness and compassion teacher, end-of-life doula and grief guide. She offers targeted guidance and training for stress management, resilience, grief and loss.