Being diagnosed with Crohn’s disease was unexpected. Like many others who receive this kind of news, I didn’t see it coming—and when it hit, it brought a wave of emotions that were hard to sort through. One feeling that stood out most was grief. This was amplified even more, given that one of my children was diagnosed with the same disease six months prior to my diagnosis.

Can you experience grief without death or loss?
It may sound strange at first. Grief is usually associated with loss—the death of a loved one, the end of a relationship, a major life change. But chronic illness comes with its own kind of loss.

Crohn’s, like other inflammatory bowel diseases (IBD), doesn’t just affect the digestive/immune systems. It affects your whole life: your plans, your energy, your relationships, your sense of identity. Suddenly, things most people take for granted become major considerations. Spontaneous outings, travel, eating out, or even just going to work can require careful planning, if they’re possible at all.

There’s also the invisible nature of it. People don’t always see the pain, the fatigue, the mental toll. Because of that, it can be isolating. You can look fine on the outside while struggling deeply on the inside; both physically and emotionally. With this particular disease there are other parts of the body that struggle too; the liver, eyes, joints and other systems are also impacted during a flare up. Many of the medications used to treat these diseases also come with a range of significant side effects.

The new “normal”:
It’s been just over a month since my diagnosis, and I’m still learning, adapting, and trying to navigate this new reality. Every day has been a challenge. I’m currently exploring different treatment options and medications in the hope of managing the disease and eventually reaching remission.

Some days, I feel embarrassed and overwhelmed by how much my life has changed. I know my son struggles with similar feelings and we often feel like we are a burden, or that life revolves around our illness and inhibits our family from enjoying their lives to the fullest.

Mental Health and Chronic Illness:
This experience has taken a serious toll on both my mental health and my child’s. We’re trying to cope with grief, anxiety, and low mood. If you’re going through something similar, please know: you are not alone. Grieving the version of life you imagined is valid. But over time the hope is that we learn to live with our new reality. We will learn what our body needs and we will find a strength we didn’t know we had.

Life with Crohn’s (or any chronic disease) is not linear. There are good days and hard ones. There are flares and remissions. But with support, self-compassion, and the right care, it is possible to build a meaningful life around your diagnosis—not in spite of it, but alongside it.

While chronic illness might change your life, it doesn’t define your worth or limit your potential.

So, how do we navigate grief around chronic illness?
I reached out to my friend and colleague, Tammy Adams, who is a Grief Recovery Method Specialist and has been with Brant Mental Health Solutions for several years now. Tammy is a wealth of knowledge when it comes to the over 40 reasons we might experience grief and I knew she would help to break this type of grief down so that everyone could understand; whether you yourself are dealing with chronic illness, or if you are supporting someone who is.

Grief from chronic illness is an abstract kind of grief. It’s that heavy feeling you get when you miss something you can’t quite explain or put into words. It’s not just about what’s been lost physically — it’s about the many layers of emotional loss that come with life-changing diagnoses and ongoing symptoms.

When we look more closely at the grief connected to chronic illness, we can begin to identify and validate the losses beneath the surface:

Loss of Trust

This might come from repeated experiences in the medical system — being dismissed, not believed, or even traumatized by care that was meant to help. Sometimes, it’s a loss of trust in your own body or ability to stay well, even when the illness is in no way your fault.

Loss of Safety

Living with chronic illness can feel like living with constant uncertainty. Not knowing how you’ll feel from day to day can be unsettling and make the future feel unpredictable and unsafe.

Loss of Faith

If you have a spiritual or faith background, you might wrestle with deep questions — Why me? Why now? Why isn’t healing happening? Even without a religious context, chronic illness can lead to a loss of faith in the medical system, in others, or in yourself.

Loss of Time

We often believe we have more time — to be well, to make changes, to get things under control. Chronic illness can make time feel stolen or cut short, leaving us grieving for what we thought we still had ahead of us.

Loss of Friends or Family

Not everyone will understand or stick around. That can be deeply painful, especially when we expect support from those closest to us. It’s helpful to gently ask: What are my expectations of others? Are they realistic or communicated?

Loss of Hopes and Dreams

Illness can dramatically alter the path we imagined. Careers, travel, family plans, or even simple joys may no longer be possible in the same way. For caregivers, especially parents of children with chronic illness, the grief around lost futures can be especially raw. The good news? New hopes and dreams can be built — with time, creativity, and support.

Loss of the Familiar

Daily routines, habits, and roles often change. We crave consistency, and chronic illness replaces it with unpredictability. Sometimes, we become attached to the “new normal” in ways that limit us, especially if there are unresolved emotions around our condition.

In some cases, we may feel regret or guilt over past choices that we believe contributed to our illness. But owning those choices — without judgment — can help us reclaim our power. Healing emotionally is just as important as healing physically.

Simple Ways to Support Someone Living with Chronic Illness and Grief

1. Be Open and Honest in Communication
   My son and I talk often about how we’re feeling. Recently, he shared some emotions that I gently explained were actually grief. Naming those feelings helped him feel seen — and helped both of us move through them with more compassion.
2. Be Expressive
   Grief is uncomfortable — both to feel and to witness. But expressing it in healthy ways is essential. Whether it’s through journaling, talking, or seeking professional help, having a safe outlet matters. Support groups and communities can also be powerful spaces for validation and healing.
3. Be Compassionate and Adaptable
   People with chronic illness might cancel plans, miss events, or be unable to leave the house some days. Let them know that your support isn’t conditional. Your willingness to adapt — and just be there — makes a huge difference.

Final Thoughts

If you or someone you love is navigating the complex grief of chronic illness, know that you are not alone. These losses are real, and your emotions are valid. Reaching out for support — whether through a professional, a support group, or a trusted friend — can help lighten the emotional load.

If you’re looking for help processing these feelings, consider connecting with our team. You deserve support on this journey. Reach out to our amazing admin team at 519.302.2300 or email reception@brantmentalhealth.com, they will take the time to listen to your unique situation and make a recommendation for your care and support (even if it is not with us!)