Living with Chronic Illness and Chronic Pain: The Quiet Grief

When you live with chronic illness, you live in a state of constant uncertainty, emotionally difficult experiences, and physical distress. There’s pain, fatigue, discomfort, and flares that bring up a variety of feelings- sadness, anger, frustration, fear, anxiety, hurt. But what we don’t talk about is… that chronic illness can show up as grief.

Grief is usually considered in the wake of losing a loved one, however, it’s far more complex than that. Grief has many definitions, one of which being “deep and poignant distress caused by or as if by bereavement” (Merriam-Webster). This definition is simple and implies a sense of loss and deep sadness.

For chronic illness, there are so many ways that loss and deep sadness can be experienced:

There’s a change in the body that may be painful, difficult, or even limiting in some ways.

There’s likely a loss of normalcy- the way life looked before is not the same as it looks now.

There may be a sense of loss of independence, freedom, or autonomy over the body.

There can be a loss of a future that feels healthy and safe.

All of these different changes can cause a lot of fear, anxiety, questions about the future. But it can also feel very similar to grief. We’re mourning a loss in many ways, a huge change that affects the future we planned on. It can feel lonely, isolating, and disappointing. It might even be life-threatening and bring a sense of anticipatory grief of one’s future.

The “stages of grief” are a frequently addressed model of understanding what grief can look like, and how it can show up. One problem with this model is that implies that we move through the stages to a place where grief no longer feels painful or causes us distress. While that aspect is not realistic in human nature, there’s some truth to the stages (although they may occur in any order on any timeline, and are not all-encompassing). With that being said, the stages of grief are denial, anger, bargaining, depression, and acceptance.

If you’re reading this, and you’re someone who lives with chronic illness, you likely already know how these different feelings and stages can show up for you. You likely have days where you feel angry at the world, or even at your body. There’s also days where you feel a sense of acceptance, and maybe even determination to move forward and take care of your body. Or, you might have days where you feel like living in total denial, wanting to just live a normal life without all of the complexity that comes with chronic illness. However grief shows up for you in your journey, it’s very real and can feel all-consuming at times.

Chronic illness and grief may be similar in other ways, too, including the long-term, never-ending nature of them. Both of these experiences do not have an end date, there’s usually no way to rid yourself of them, and they stick with you for a long time.

Clearly, there is a huge connection between chronic illness and mental health, including the connection to grief.

How I work with chronic illness and grief as a therapist

As a therapist who specializes in and lives with chronic illness, I’ve seen firsthand what the grieving process can look like.

That’s why therapy for chronic illness has to meet you where you’re at.

You can’t talk someone into feeling differently, and trying to do so is likely not going to help. Traditional cognitive-behavioral therapy is great, but it can miss so much of the bigger picture with chronic illness.

In my therapy work with chronic illness warriors, I focus on a sense of acceptance, providing support/understanding, emotional regulation, community connections, and figuring out a path forward. Wherever you’re at in your journey, I’ll meet you there. My role can change based on what you need and what your goals for therapy might be. Together we work to identify your wants and needs and how to get there.

Art Therapy and Chronic Illness

Additionally, I find it incredibly powerful to integrate art therapy or other creative modalities into the therapy space. For chronic illness, art therapy can be a great way to create meaning, process emotions, and express feelings outwardly. Art is helpful for externalizing emotions (similar to journaling) with more abstract thinking and without needing to put feelings into words. When you’re grieving change, art therapy can be an effective and supportive tool for emotional processing. See my previous blog post on this topic to learn more about how I utilize art therapy for chronic illness.

Understanding and lived experience as a chronic illness therapist

Chronic illness warriors are often misunderstood and can experience the effects of ableism and discrimination in various settings. We’re often on the receiving end of medical gaslighting and invalidation from providers. And that’s why I care so much about this topic. I think that the best therapist for a chronic illness warrior is someone who truly gets it, whether through thorough training/learning or living it themselves.

If you’ve read this far, lucky for you, I have both of those things. I’m an art therapist and counselor with over 10 years of lived experience navigating chronic pain and illness, medical invalidation and gaslighting, and needing to advocate for my own care and diagnoses. I get it.

If you’re looking to get started with therapy for chronic illness, I’m currently accepting new therapy clients in Maryland, Colorado, and South Carolina. I work with chronic illness clients in-person in Baltimore, as well.

If you’re ready to learn more, let’s start with a free intro call, which you can schedule here.

Elizabeth Allen, LCPAT, LPC, LGPC, ATR-BC

Creative Pathways Counseling