Understanding Grief When It Comes to Your Chronic Condition or Disability

Having a chronic condition or disability can mean living without a lot of things. It’s important to talk about this grief and find ways to cope.

Having a chronic condition or disability changes your life in many ways. You often have to modify aspects of your life in order to create time and space for rest, appointments, and symptoms. Doing this can be really difficult.

The mental health of those who live with a chronic condition, chronic pain, or disability is generally ignored. One particular aspect that doesn’t get the validation or recognition it deserves is grief.

The reason for this is that society often views grief in a fixed way, as something that only happens when a loved one passes away and occurs in five stages. However, there are many situations in life that cause loss and therefore grief, including drastic health changes.

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Things you might grieve when living with a chronic condition or disability

• your healthy life
• the feeling of not being in pain or symptomatic
• the things you used to do or experience without your condition
• the ability to say “yes” to career opportunities and other exciting opportunities
• the ability to trust your body and its ability to function well
• the people, friendships, and relationships you lost, even if they were misunderstanding and not good for your health
• your independence, as you may need help from others at times
• financial security, as treatment and care can be expensive
• aspects of your identity
• hobbies and activities you used to be able to do more easily, like cooking, sports, crafts, music, travel, reading, gaming, and exercise
• how your body used to look due to scars, surgeries, medical devices, and weight changes

Why isn’t this grief acknowledged?

The five stage framework of grief has been in place for a long time. These stages, originally named by Elizabeth Kübler-Ross, are:

• denial
• bargaining
• anger
• depression
• acceptance

This framework is massively contested and debated. Some think it’s outdated, and others think it’s helpful.

While this framework may be relevant in certain situations connected to loss, like breaking up with someone, much of the research questioning its use is based on grief related to illness or death.

The constant presence of symptoms with chronic conditions and disability, and their 24/7 impact on your life, make it nearly impossible to have any sense of staging, phasing, or navigating grief. These symptoms are unpredictable and long-term, so they’re a constant reminder and physical enactor of loss.

What’s more, people often don’t recognize that what they’re feeling is grief. Grief can be intertwined with feelings of frustration, despair, anger, helplessness, shock, numbness, and confusion. It’s often complicated and can manifest itself in many ways.

It’s also closely tied to the difficulty of accepting the loss. Acceptance of a chronic condition or disability is another aspect that’s often difficult for many.

We tend to think of grief as mourning something we used to have, but it’s also about mourning the things we might have had in the future. This is why even those born with chronic conditions and disabilities experience grief as well.

Will this grief ever go away?

Grief is one of the toughest moods with a chronic condition or disability. The five-stage framework doesn’t apply to it, and it’s an emotion that’s rarely acknowledged as a core part of this experience. This also means there’s no right or wrong way to grieve — it’s deeply personal.

I’m often asked how I personally handle the grief and how I feel about the things I’ve lost.

It’s difficult, and the grief often ebbs and flows. There are days when I’m more settled with having lost a lot of things, but there are others when I’m reminded of the things I’ve had to give up and say no to because of my conditions and disabilities.

For this reason, coming to terms with it is a very slow and continuous process.

The takeaway

What you are feeling is valid. It makes sense. It’s OK to feel the grief you feel. You don’t have to overcome the loss and grief to make choices that are beneficial for your health.

If you need to pass on doing something you were able to do before, you can be sad about that and celebrate the fact that you made the best choice for your well-being at the same time. You don’t have to feel one fixed way about it.

The grief will likely always be there, to some extent, but slowly, over time, you can make more sense of why you feel that way. That doesn’t mean it won’t hurt you, but you will be able to validate your own feelings of grief and acknowledge the things you’ve lost. And, in time, you’ll be able to understand it, sit with it, and grow around it.