Understanding Grief and Chronic Illness

One thing that might surprise folks about living with a chronic illness is the amount of grief there is to navigate. 

In addition to having to deal with the physical reality of your illness, juggling medical appointments, and trying to find a way to make ends meet, chronic illness involves a lot of loss. Unlike a one-time event that leads to grief, chronic illness is a series of losses, over and over and over. The losses that come with a chronic illness or disorder are not a one time thing, which can make it even harder to cope with. 

Thousands of people in the US are newly dealing with chronic illness as a result of Long-COVID. It’s more important than ever to understand the reality of living as a chronically ill person, what that can look like, and how to cope with the emotions that come with diagnosis.

Why does chronic illness cause grief? 

The reason chronic illness brings up so much grief is because it completely changes the way you can live your life. Grief can come up in reaction to any number of situations in life, like moving, changes in finances, and relationship shifts. Sometimes dealing with chronic illness means dealing with all of those things at the same time. So many changes all at once is devastating and can make you question your sense of self. 

Change is often a huge source of grief, especially when the change is involuntary and not a choice you made. It’s always tempting to imagine the life you didn’t lead, or daydream what would have happened if you made a different choice, if you got that job, if you stayed in that relationship. The what-ifs in life are always going to be tinged with some grief, because there’s no way for us to have it all. When you’re chronically ill, those what-ifs might come up even more because of the changes that come with a serious illness.

In addition to the grief of losing what could have been if things were different, the number of changes that chronic illness often requires can bring up grief. 

When you are diagnosed with a chronic illness, it usually comes with major changes in what you can and can’t do. Some changes that often come up for chronically ill people include: 

• Changes in what you can or can’t eat

• Coping with medication side effects

• Shifts in your energy levels

• Arranging, getting to, and paying for endless doctor appointments

• Dealing with constant physical discomfort or pain

• Being treated differently

• Losing friends and relationships

• Losing mobility and the freedom that comes with it

• Worrying about money or insurance or both

• Finding accessible housing

• Shifts in physical appearance

It’s very normal to deal with grief as a chronically ill person. If you have been diagnosed with a chronic illness or are dealing with chronic health issues, here are 5 ways to cope:

Allow yourself to feel your feelings

It can be hard to find time when you’re dealing with a chronic illness between the demands of day to day life and the chaos of constant medical issues, appointments, and the like. You might feel tempted to push down the feelings that come up in response to your diagnosis because you don’t feel like you have the time to feel anything. 

Unfortunately, feelings need to be felt, and there are often lots of feelings that come up in response to chronic illness. Some of the emotions you’re dealing with might be: 

• Frustration

• Rage

• Sadness

• Confusion

• Fear

• Shame

• Guilt

• Relief 

• Despair

These feelings can be tough to deal with, but part of recovering from grief is allowing yourself to feel these intense feelings. Grief in itself is intense, and the emotions that are often underneath grief can be intense as well. Try to be as compassionate with yourself as possible while you let yourself feel your emotions. 

Emotions are normal. Feeling them is normal, even when it feels horrible. It might help to have some coping skills ready to go when you allow yourself to tune in with those intense feelings, like making sure you have someone you can call on for support or a few grounding exercises written out on notecards that you can follow when you’re getting overwhelmed. 

Work toward acceptance 

Acceptance of a chronic illness might sound like agreeing to be miserable forever, but that’s not actually what it has to mean. The idea behind acceptance is that it causes a lot of pain and distress to be struggling against reality. Accepting the idea that your illness is long term (or serious, or causing your discomfort, or whatever it is that you’re struggling with) might feel like giving up, but it can be an important step for you to be able to move forward. 

It’s okay to acknowledge that you’re feeling what you’re feeling. You don’t have to be okay with what’s happening or happy or anything like that. Sometimes acceptance means admitting “I’m really freaking mad about this,” or “I don't think I can ever accept this.” Giving yourself permission to admit what’s really going on can bring a sense of relief. 

It might also help to accept that health is more out of our control than we like to think.

Remember that no matter what, no one stays the same forever. We all have to deal with our bodies changing at some point, and the older we get, the more things tend to go wrong. Learning at a young age that you are not your body and that you can lead a happy, meaningful life no matter what happens to you is an incredibly painful but invaluable lesson.

Seek out others who are chronically ill

One of the hardest things about adjusting to life as a chronically ill person is the way your relationships change. It can be hard to keep up with people in the way you used to. You might not have the energy for the things you used to do with your friends. You might feel like you’re no fun to hang out with anymore, but that’s not the truth! 

Chronically ill and disabled people exist and have always existed, and they have found ways of building community. As messed up as the internet can be, the way modern technology allows people to connect to each other from their own homes has shifted the way that chronically ill and disabled people can build community. There are many places on the internet where you can find groups of chronically ill people. Try searching for “Spoonie” groups or pages to start! 

This isn’t to say that you need to stay home at all times if you’re chronically ill. Spending time with other chronically ill or disabled people can help you find places in your area that are accessible and give everyone a chance to feel understood and valued. 

Find a creative outlet for your feelings 

When it comes to feeling your feelings, it can help to have a creative outlet. Intense emotions can be tricky to work through, but having a way to let the emotion out can help. Some people find a lot of comfort in using creativity to express their feelings. 

Creativity can be whatever feels good for you. Some people like to channel their feelings, like rage, fear, sadness, into making art or writing in a journal. 

Others like to express themselves through movement. Moving your body might look and feel different after being diagnosed with a chronic illness, and you might need to explore a few things to find what works for you and what feels good to you physically and mentally. Allowing yourself to play can remind you that you deserve to feel joy and to experience play, just like everyone else. 

Find ways to assert your agency 

Having a chronic illness means a slow steady loss of control over your body. While the control that we have over our bodies is not as strong as many would like to believe, it’s still unbelievably painful to realize that you can’t do much of anything to make yourself feel better physically. 

Try to find other ways to assert your agency like gardening, making art, or making your space really cozy and comfortable. Even something as simple as choosing a new book to read or a show to watch can remind you that while some things will always be out of your control, there are choices that you get to make. 

Learning that you have a chronic illness diagnosis is often a life-changing experience. Chronic illness tends to impact every aspect of life, from work to leisure time to money to relationships. Remember, chronic illness is not your fault. If you would like more support in coping with chronic illness, our therapists at Hope+Wellness can help.