Chronic Illness and Grief

If you are a person who deals with chronic illness, you know that it takes an emotional toll.

According to a 2018 National Institutes of Health study, nearly half of all Americans suffer from at least one chronic disease. If you are not dealing with a chronic illness, chances are good that you know someone who is.

When we define grief, we say it's the normal and natural reaction to loss of any kind. When it comes to chronic illness, there can be many losses involved. Here are a few that someone might experience:

• Loss of health

• Loss of normalcy 

• Loss of ability

• Loss of identity  

• Loss of control

• Loss of hope/optimism

• Loss of dreams

• Loss of productivity

• Loss of income

• Loss of freedom

This list is not all-encompassing, of course. Because we are each unique, our losses are unique as well. The loss of health would be considered a primary loss, but the other losses that go along with that are called "secondary losses." These can be more invisible to others, yet still extremely painful for you. These losses that are hard to see from the outside are called "ambiguous losses." Whether it's primary, secondary, and/or ambiguous, loss is loss. The resulting feeling of grief is normal and natural to experience. 

So, how do you cope?

Here are three ways to cope with the grief and emotion that comes with the losses associated with chronic illness.

1. Give yourself permission to feel all your feelings about your diagnosis.

This is not to say that I think people should dwell in negativity. I genuinely do believe in the power of positive thoughts and optimism. However, if we constantly push down how we truly feel about it, we will be exhausted from pushing down emotions. And those emotions won't leave. They will keep tapping you on the shoulder, so to speak, to remind you they're there until you are willing to deal with them. Denial does not help us move through our difficulties. It keeps us stuck.

When my daughter was first diagnosed with Type 1 Diabetes, she was seven years old. At the time, she said, "So, I just have to check my blood sugar, count carbs, and get a shot of insulin? That's easy!"  I remember thinking just how sweetly naive that was. I didn't expect her to retain that attitude, and she hasn't. Type 1 diabetes is a disease that requires constant vigilance to manage. It's relentless and exhausting, and it's healthy to recognize that. By recognizing that and dealing with the feelings that come up, she has a healthier relationship with her condition.

One idea to help with this is to write a letter to your condition detailing how you feel about it. The act of writing it out really helps us identify how we are feeling, and it feels really good to get it all out on paper. If physically writing doesn't work for you, you could dictate the letter on a voice memo on your phone—anything to get those feelings out.

2. Work on accepting what is.

This can be difficult and can take a lot of work to get to the place where we can accept what is. Sometimes this requires working with a coach or a therapist, but getting to that place is worth whatever it takes. 

I'm not saying to be complacent with your condition or care. But making peace with reality helps us move forward. Accepting our situation allows us to have realistic expectations and provides us with the best opportunity to take care of ourselves. If we are in denial about our health condition, it's much harder to be proactive about what we can do to preserve our health. 

 3. Practice radical self-care

We often think of self-care as pedicures or bubble baths, which can be nice, but that's not what I'm talking about here. Kendra Adachi, found online as The Lazy Genius, always counsels to Name What Matters, and this is important in dealing with chronic illness.

Does sleep really matter in how you feel day to day? Then prioritize getting the hours and quality of sleep you need. That might mean that other things have to drop off your schedule or to-do list so you can get the sleep you need. Does your diet make a big difference? Then feed your body well. Is your energy or stamina limited? You might have to set boundaries around what extras you take on.

Another way to practice self-care is to be kind to yourself. That goes along with taking care of yourself, but it also means not beating yourself up for any limitations you might encounter, extra care that you need, or for having emotions related to your condition. Our bodies can sometimes feel like the enemy when we are battling chronic illness. Try not to join forces by antagonizing yourself.