Chronic Illness and Grief

They say when you lose someone you love, you never really get over it. You eventually learn a new way to live without the person and although the hurt never goes away, it tends to slowly get easier with time. But what happens when you lose a piece of yourself?

It took me quite some time to realize that throughout my journey with chronic illness and pain, I have been grieving. For many years, I’ve been grieving the loss of the person I was before I got sick. And similarly, I also grieve the healthy version of myself that I sometimes still dream of being—the vibrant, full-of-life, successful person I had once imagined myself becoming before pain and illness came crashing into my world.

When you have a chronic illness, it can sometimes feel like a never-ending ride on an emotional rollercoaster, and grief can be one of the hardest emotions to deal with. There’s a lot of research and literature on grief, but the grief that accompanies the ongoing self-loss that comes with chronic illness is unique.

In her book, What Doesn’t Kill You, Tessa Miller says, “Grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnect from reality—but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”

There is no right or wrong way to grieve, and the process of working through grief when you’re chronically ill will look different for everyone. But realizing that grief is a valid and completely normal part of having a chronic illness helped me be a little gentler with myself. And there are a few things I wish I had known a little sooner on my own grief journey.

Letting go of control is vital to the grieving process.

Humans are built to value order over chaos so letting go of the need for control can be difficult. And fear of the unknown can leave us striving to assert as much control as we possibly can over our lives. Our minds convince us that the key to a safe, happy life lies in having control and certainty. But the reality is, we have far less control over so many of the variables that make up being human, and that can include becoming chronically ill.

Dr. Paul Chafetz, a clinical psychologist, said, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces this illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness. But where is it written that we’re guaranteed good health? Assuming this was promised was an illusion all along.”

The truth is, control is often an illusion too. And good health is not promised. If we can better accept this truth, we can let go of some of the anger that accompanies the grief process.

Anxiety is part of grief, too.

Anger is one of the five stages of grief, as popularized by Elizabeth Kübler-Ross, but I’ve learned that anxiety is just as much a part of grief too, especially grief associated with chronic illness. Being diagnosed with a chronic illness is traumatic and anxiety serves as a sort of protective mechanism. But there are so many tools for battling anxiety and you can find some here.

Mindfulness is one of those tools and it can be helpful in the grief process too. People with chronic illnesses tend to spend a lot of time wishing for the past or worrying about the future. Little headspace is reserved for the present. Learning to practice mindfulness can be valuable.

Try not to beat yourself up for worrying about the future. It’s what humans do. And when you’re chronically ill, you have valid reasons to worry. But you have the power to shift from worrying to planning, which can be beneficial. Instead of worrying about an upcoming doctor’s appointment, for example, plan for it. Write out a list of concerns and questions beforehand to help you be more prepared. Not everything is beyond your control and shifting from worrying to planning is a great tool.

Lastly, seeking professional help for your anxiety and grief may be one of the most fruitful things you can do. Therapy has been an integral part of my healing journey. You can learn more about finding a good therapist here.

Acceptance may be a lifelong process.

In the Kübler-Ross model of grief, acceptance is the final stage. But acceptance indicates some type of conclusion, which may never occur for the chronically ill. Acceptance comes in stages and may change throughout the course of your illness and life.

The Anxiety and Depression Association of America said that acceptance for chronically ill folks comes from a combination of things: “Recognizing that something cannot be changed, consciously working to adjust expectations, and actively seeking more satisfaction and meaning in the things you can do.”

For me, this has proven true. Learning to adjust my expectations has been huge. And seeking satisfaction and meaning in my life today has been incredibly rewarding and healing. Writing and helping others who are struggling has helped me find that in a big way.

I’m learning to accept that I may always be grieving the life I had once dreamed of for myself before I became ill. But I’m also learning that I can grieve and create a meaningful, joyful life at the same time. You can too.