How to Stay Present as You Grieve Your Chronic Illness

Most people believe that grief occurs mainly with the loss of a loved one or a job. But facing your grief can be even harder when your health is declining or you’ve received a health diagnosis. Here are three ways it’s hard to stay present with yourself as you grieve your life with a chronic illness.

#1. Not Allowing Yourself to Grieve and Feel

The feelings that you experience after receiving a chronic health diagnosis can be so overwhelming that you may be tempted to avoid thinking about it at all. 

Common Reasons You Consider Avoiding Your Chronic Illness Grief:

1. Fear of becoming too emotional or out of control
2. Worry about how others will respond to your feelings
3. You’d rather not feel your emotions right now
4. Belief that your feelings are “wrong” or don’t matter
5. Worry that focusing on your health will distract from other life responsibilities (i.e., work, family schedule, etc)
6. You’re in “survival mode” and focused on managing your chronic condition
7. You don’t have time to think about it

Have any of these reasons hindered you from being present with yourself right now? If so, you’re not alone.

The urges to avoid thinking about how much your health is an inconvenience to your life right now is normal. Who really wants to feel or be reminded of that? As uncomfortable and scary as it is, avoiding your feelings is one of the things not to do after being diagnosed with a chronic health condition.

Facing your feelings about your health can actually help you move forward. Avoiding your feelings can intensify them, interfering with other areas of your life later. In fact, denying yourself the moments to grieve your chronic illness can lead to declines in your mental and physical health over time. 

The good news is that you can be supported with facing your feelings. Working with a Chronic Illness Therapist can help you keep your mood steady as you grieve and explore your current needs with compassion. You won’t be expected to “get over” your feelings, but instead you will be supported in sitting with them and using them to take care of yourself.

#2. Not Recognizing Yourself with a Chronic Illness

It is truly scary and confusing to not recognize yourself anymore while living with a chronic condition. You may find yourself asking, “How did I get here?” and “Who am I?”

I call this a Chronic Illness Identity Crisis.

Here are some things that can naturally lead a chronic illness identity crisis:

1. Making major lifestyle changes to support your health 
2. Saying “no” to things when you would usually say “yes” 
3. No longer participating in activities that you used to enjoy (because your health makes it harder or impossible to do so)
4. Becoming more of an introvert and spending time alone (because socializing drains your energy quickly and you need time to recover).
5. Your health condition/treatment has caused changes in your physical appearance.
6. Feeling disconnected with important parts of yourself from before the diagnosis (i.e., goals and aspirations, traveler, occupation, reputation, etc.)
7. The people around you change (i.e., not seeing or hearing from them as often, learning certain people are not supportive/helpful)
8. Constantly attending doctor appointments
9. Becoming more aware of your limitations
10. Feeling more emotional than usual

Most of these are expected adjustments to make after being diagnosed with a chronic illness., but that doesn’t mean you have to like how things have turned out. While you grieve parts of your life that have changed, continue nurturing recognizable parts of yourself and begin to explore what’s new with curiosity – not judgment.

For example, if mobility is challenging for you but you loved going for walks before, consider other ways you can enjoy time outdoors, pacing yourself along the way. Also, if your fatigue levels interfere with entertaining as you used to, consider having others come by for shorter periods of time instead.

Be mindful that these adjustments are not meant to replace things you love about yourself or even erase the grief you feel. Instead these changes are meant to meet you where you are right now (in the present) while honoring your limitations with compassion. This is an important chronic illness management tip to use even on the hardest days.

#3. Struggling to Accept Your New Norm with a Chronic Illness

Have you ever said to yourself “This can’t be my new reality,” or “I can’t see myself living like this?” These are some of the statements that many people make when trying to accept their new reality with a chronic condition.

But what does it even mean to accept your chronic illness?

The Seven Stages of Grief for Chronic Disease describe the acceptance stage as acknowledging your new norm with a chronic illness, using new skills and approaches to move forward with your life. The acceptance stage does not mean you have “gotten over” your feelings or are happy with the fact that you live with a chronic condition. But your actions and mindset have shifted to finding ways to make the best of your life as is. 

But how do you get to this point? Some days you may feel like you’re accepting of your life with a chronic illness, while other days may seem like you’re back where you started when you first were diagnosed. That’s completely normal, as chronic illness grief is not linear. 

Different life experiences (also known as grief reminders) can bring out different emotions and responses for you, making it feel impossible to accept your new norm.

Some of the signs that you are not accepting with a chronic illness include:

1. Not following through on your medical plan
2. Pushing yourself beyond your current limits
3. Ignoring signs that your body needs rest
4. Not allowing yourself to ask for or receive help
5. Holding yourself to expectations and routines from before your chronic health diagnosis

Accepting your chronic condition is a hard thing to do, but it’s necessary. Most people don’t want to make or experience these major life changes, but choosing to support yourself with the changes as they come up can keep you as grounded in the present as possible when you grieve.

Your quality of life and mental health can significantly improve when you adopt an accepting mindset, because in turn, you respond more gently with yourself. The thoughts and actions you have become more focused on giving yourself grace and finding meaning in your life, even in moments when things are different and unfamiliar.

How to Be Present with Yourself as You Grieve Health Condition

1. Speak your feelings aloud to yourself by saying “I have xyz illness.” It may sound ridiculous, but you are more at risk of denying yourself the support and care you need right now when you are not blatantly honest with yourself.
2. Express your feelings and needs to other people in your inner circle. Talking with others about your chronic illness can support you with accepting your new norm with a chronic illness. Select supportive people to listen and encourage you as you come to terms with the news. They can also learn how to be the best support for you by having these conversation. Supportive community makes you feel less lonely and helps you carry the feelings you have about your health, improving your quality of life moving forward.
3. Give yourself time to be emotional. It’s okay to feel scared, angry, confused and sad. Set aside some time to let those emotions speak instead of forcing yourself to hold it all together. If you need help from others to comfort you, go ahead and ask for it. This is an act of self-compassion not to be overlooked.
4. Express your feelings nonverbally (i.e., art, journaling, dance, poetry, music). Sometimes it helps to express feelings through action, especially when you are not ready to talk, are not feeling supported by others or are trying to figure out what your feelings actually are.
5. Explore what your body of today needs (not your body before your chronic illness) 
6. Start building a new relationship with yourself by being curious about current abilities and things you enjoy doing.
7. Gather Chronic Illness Resources that help get you through the hard days.
8. Explore new hobbies. You’d be surprised at the number of things you enjoy.
9. Take time to rest when needed. This does not always come willfully, but it’s important to put yourself first here. Giving your body time to rest makes it easier for you to focus in on the life around you (even the good parts).
10. Focus on your immediate surroundings using your 5 senses. The 5-4-3-2-1 grounding exercise helps you soothe your anxiety, become more present with your emotions and feel safe in your surroundings.

Next Steps for Chronic Illness Grief Management

I help individuals and families who are living with chronic illnesses and the emotional toll that it can bring. Therapy is a powerful tool that can help you continue grieving your chronic illness in a safe space. 

Although your journey with a chronic health condition can be hard, therapy can help you face the hard moments with support, giving you more confidence and improving your mental health. 

You can schedule your first appointment with me by booking a free 15-minute consultation call.