Caregivers

Caregivers are essential to living well with chronic illness. No one should have to live with chronic illness alone. Unfortunately, I’m sure that happens all too often. I don’t want to imagine my life with chronic illness without caregivers, especially without my husband.

A good caregiver gives care whenever it’s needed, just knowing what you need and when. A good caregiver gives care without asking for anything in return, without waiting for special recognition, without making you feel guilty, and without waiting for you to shake it off and get back to work carrying your share of any burden. A good caregiver provides affection in the little moments, to remind you that you’re human and you deserve love. A good caregiver sticks up for you to others, describing your lives honestly and representing your illness the way you would yourself. A good caregiver gives care even when it’s really hard, and even when they have their own care needs. A good caregiver knows where to turn for their own care, whether it’s to you in the right moments, or to another loved one. A good caregiver maintains his or her own interests and activities outside of caregiving, and realizes that sometimes he or she will have to sacrifice these and other needs, at least for a little while. A good caregiver makes sure you know you can always turn to them, with honesty and openness, to express whatever you are feeling. A good caregiver lets you be morbid and depressed without making you feel badly about it. A good caregiver lifts your spirits with exactly the right reminder for you of how much love and life there is in the world, even around the edges of chronic illness.

My husband, David, is the ultimate caregiver, because he does all this and more, and because he is also my best friend and my partner. I am so lucky to have him by my side. I truly wish the same good fortune to everyone else who is living with chronic illness.

I’m also very lucky to have many other caregivers: my parents, my local family, my extended family, and my friends. Just as it takes a village to raise a child, in many ways, it takes a village to care for someone with chronic illness. It takes caring calls and messages from family and friends, it takes unannounced visits with ready-made meals, and it takes visits from friends just to talk and be. These people are good caregivers because they allow me to live my truth my way. They listen, they don’t push, and they accept whatever I need in the moment. This kind of treatment from caregivers goes a long way toward reducing guilt, which is a central problem to life with chronic illness. These caregivers make it possible to continue to live a full, good life, with chronic illness at the center.