Managing Grief with Chronic Illness

“I know that the ones who love us will miss us.”

Keanu Reeves, on what happens after death

Over the past two weeks, I’ve faced an emotion I haven’t dealt with in years. I’ve written about grief before, in the context of coping with a chronic illness diagnosis, but I haven’t reflected on physically losing someone. Relationships come and go, and we mourn losing our connection to a friend, but when death enters the picture, there is a finality to the whole situation we cannot come back. Living with a chronic illness means a strong emotional episode can trigger an exacerbation. That can set us back days, weeks, or even months.

So how do we manage an emotion like grief? 

It’s difficult, because there’s no right way for each person. There are healthy ways to manage grief and unhealthy ways. With a chronic illness, we must find the healthiest way to manage our grief to protect our wellbeing. What shape that takes depend on ourselves.

My Grief

For now, no one is dead in my life. But I have the opportunity to prepare for the death of a loved one. Death can surprise us, or we can have the grace of a timeline. My cat, Lytton, is undergoing some major health concerns. I’ve had Lytton for over ten years, and he’s a significant presence in my life. While he is eleven, I always assumed I would have more time with him.

With each emergency visit and specialist conversation, we are left with the feeling that the end is coming sooner than expected.

Knowing that one of my sources of emotional comfort and napping buddy may soon pass has thrown me headlong into the grieving cycle. I’ve had to reassess priorities and recognize the impact grief will have on my MS if I am not careful.

What follows are some thoughts I’ve had surrounding death and loss. 

Another Thing Chronic Illness Takes…

Chronic illness takes away our ability to grieve in the manner we wish. We can grieve however we want, without regard to our disease, absolutely. But if we have people who depend on us, or we don’t want to deal with a problematic exacerbation, we must keep one eye open to our health.

We must contain and manage our grief.

I am not suggesting “suck it up” or “get over it,” attitudes. No, grieve as long as needed in the necessary form. But be aware of what you are doing and how it might impact your health. Grief is stressful, and if we allow that stress to overwhelm us, we can make ourselves sick.

In the most profound moments of grief, we often do not care about our health. Nothing matters except the loss. Despite how it feels, the intensest moments of pain will pass, and our lives will return to the new normal without the individual. Should we stop taking care of ourselves during our period of grieving, and that helps intensify an exacerbation, the effects of the flare-up may be lifelong. 

To reframe what I mean through an example (this is for illustrative purposes, it hasn’t happened): I allow myself to get so worked up over Lytton’s death that I get an exacerbation. This leads me to lose function of my leg due to numbness, and I must be hospitalized for intervenous steroids. While I have Relapse-Remitting MS, it doesn’t guarantee my leg functionality goes back to 100%. Instead, I leave the hospital with a permanent 80% functionality of that leg. I can no longer achieve the specific goals I had for myself, and I must adapt my life to a new normal. 

I may grieve for Lytton’s death over several years, but I potentially have at least thirty more years to go beyond that. For the few months of intense emotional grief, by not taking preventative measures to balance my health and despair, I’ve impacted the rest of my life. Additionally, Jai loses his mother while I am in the hospital, and I’ve permanently reduced my ability to interact with him. 

I will probably feel guilty for not taking care of myself, needing to be hospitalized, and the impact of the exacerbation on my overall health. All three stemming from a situation where I could have prevented the flare-up through self-care.

Note: with autoimmune/chronic illness, we cannot prevent our flare-ups. They will happen when they happen. We can, however, take steps to minimize them from occurring. It’s remembering to take these steps while grieving to help prevent or lessen the impact of an exacerbation.

Taking Care of Yourself by Preparing for an End

If you know a loved one is dying, you have the opportunity to make a health plan for yourself. I know we aren’t always so lucky – a phone call can change our lives in an instant, so we can’t always have a plan in place. But if you can develop a simple outline, you will be a step ahead on managing your health.

This is one of those gray areas of life where I believe it’s essential to be mindful while looking to the future. These are two opposed concepts, but we can hold both of them in our minds as we manage our chronic illness. Mindfulness is being in the moment, and the last thing you should do is think about the future/pending death.

First, We Prepare

If we can shift our perspective, we might be able to manage the impact of the loss and appreciate the time we have left. I will discuss the perspective shift in the next section, but I want to highlight some ways we can prepare ourselves.

You know yourself and what might be a trigger for an exacerbation. If you suspect grief will provoke a flare-up (the stress of loss would cause an exacerbation for me), gather all the tools you usually use to manage your health. Speak with your healthcare specialist, so they are prepared. They may even provide you with the appropriate tools to manage your illness ahead of time.

My neurologist gave me a regimen of steroids when I went abroad, so I had access to them in case of an emergency.

Reach out to your support network and prepare them for the loss, if they don’t already know. When you need a distraction for a few hours because you feel overwhelmed, let them know so they can help. They might be able to prepare food, take your little one for a while, or treat you to some pampering. Allow them to help you when they offer

Build-in mourning time. If you can prepare work for a few days off after the death, take them. If you have a counselor, begin to work through the grieving process with them. Once you have some plans in place, you are ready to practice mindfulness.

Be Mindful of Your Moments

Before your loss, and after you’ve set up a care plan for yourself, it is time to practice mindfulness. Reside not in the future without the individual, but in the moment while you are with them. Seeing them in pain, hearing difficult prognoses, or watching them fade will remind you what is coming, but that moment hasn’t happened yet.

While you are with the one you love, appreciate everything. Enjoy their smell, feel, touch, words (or sounds), how they make you feel while together. Take pictures, create things together. Be present with them, and help them enjoy these moments with you.

When I am mindful of the moment with Lytton, I am appreciating my time in a way that is meaningful to me. Twice I’ve had the opportunity to see what life will be like without him, and the second time was more comfortable to handle. In the weeks between his health episodes, I spent time being mindful of him. I told him how much I loved him, cuddled him, and gave him the affection he needed. 

I also spent the time changing my perspective surrounding the eventual loss.

Recognizing the Fluidity of Life

So often we get in a comfortable pattern in life. For good or bad, we’ll convince ourselves things will always stay a particular way. We’ll always have our home, our transportation, our relative health, our friends and family, and everything in between.

Death is inevitable for all living things. All inanimate objects will stop working or crumble. The universe is slowly dying. Literally, nothing in our current reality is permanent, no matter how stable it may seem.

Life, by its very essence, is fluid. We may not be friends with the people we grew up with or still have our first car. Everything is constantly changing and rarely stays the same, even when it feels stable. 

How you are today is different from yesterday will be different from tomorrow. We know this living with chronic illness. Each day is different, and each day comes with the potential of loss in our abilities.

We get caught in this trap where we think our loved ones will always be there with us. We desire that they will always be there, despite knowing death is inevitable. We push the idea of death off, which is perfectly normal. It’s when death comes around to remind us that it’s there that we fight the change.

I found that letting go of my expectation of Lytton, or anyone, will always be with me helps manage my coming grief in his loss. I recognized I built up this belief he would still be with me, even though I knew his time was short. For ten years, I refused to acknowledge he would pass eventually.

This does not remove the sting of the loss or the moments where I wish I could feel his weight on my lap. While he was in the animal hospital last time, I had to move some black boots away from a spot he frequents. Every time my eye caught the shoes, I thought it was him. 

Recognize that despite our best efforts, things change. The very nature of the universe dictates this Truth. Everything is in flux.

Managing Grief in a Meaningful Way

How to manage our grief in a meaningful way, especially with a chronic illness?

At this point, I do not know the answer to that question, at least for myself. Maybe once Lytton passes, I’ll know what works for me. Perhaps you already know what will work for you.

I think having a plan in place to manage your health during this period helps. Recognizing that you cannot prevent the loss and finding ways to appreciate the time you have will help endure the sting. I also think finding a healthy way to cope with the loss matters. If you have a counselor, take time to contextualize the loss. 

I mentioned being mindful of your grief while managing your illness above, but take the time you need to grieve. If it takes you a few months to a few years to get to a better space with the loss, do not pressure yourself to “get over it” sooner. Do not feel guilty if you find you overcome the profound grief sooner. You have your own timeline, so honor it.

Honoring the Life

Some final thoughts are finding ways to honor the life once they pass.

Now that I am faced with a significant loss, it brings about another lesson in priorities. Getting my diagnosis started the process, giving birth to Jai continued it, and Lytton’s pending death cements it: I need to put things in a proper perspective. Life is fleeting, therefore wasting time on the petty stuff is meaningless. A few weeks ago, I read a quote by the late Maya Angelou:

People don’t always remember what you say or even what you do. But they do remember how you made them feel.

So many times, I forget what causes friendships to break apart, but I do remember how the other person made me feel. When I get a feeling of love for my friends, it’s not necessarily from a specific incident, but a warmth of the time spent with them.

Death is a terrible separator. Cognitively I knew this before Lytton got sick, but now I am starting to feel it. I am recognizing the impact I have on others, and while I cannot control how they think about me, I will be true to myself. I will honor Lytton’s memory by being more like him: love freely and forgive fiercely. 

Lytton understood people’s hurts and sought to comfort them without expectation of reward. His entire life, he demonstrated compassion to me. Sure, he had his cat moments, but overall he never judged others, nor did he hide his desires.

I started down a similar path this year, and his pending death confirms that it is the right direction for me. I will continue my internal work to be less judgmental; take each situation as it is, not how I think is; and be more compassionate to everyone, including myself. I will assert what’s best for me without fear of judgment, and I will take care of myself without feeling shame.

Finally, I will live more in the moment, something all animals are known to do. I try to do all of this in honor of Lytton.

Lytton waiting for an important medical procedure.

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One thought on “Managing Grief with Chronic Illness

  1. Oh Deborah, I’m so sorry. Poor Lytton, and you’re so right about grief can affect our stress levels and consequently our health. You’ve made fantastic points, especially about reframing and adjusting our perspective. It’s never easy. I lost my dog 8 years ago now and it’s still painful to think of him, I still miss him. Furbabies are our family. Spend what time you can with your precious Lytton. Sending lots of love & hugs your way  ♥ ♥ ♥ ♥
    Caz xx

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