managing-grief-chronic-illness

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.

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Now What? Beyond the Diagnosis

This post was originally published in March 2018.


On Wednesday I published a deeply personal post about the first couple of months after getting my MS diagnosis and how I went through the coping and grieving process. Because it was an emotionally charged post, I wanted to balance it out with a post about finding acceptance and the healthy ways I’ve tried to manage my MS both physically and mentally.

First, let’s get this out-of-the-way: Any changes made you have to want for yourself and they will occur in the amount of time appropriate for you.

Do not let people, myself included, tell you that you have to make changes in a specific timeline or before you are ready.

Do not read this post and feel like you aren’t doing enough to manage your grief or your diagnosis. You are unique and different from me and that’s okay.

You will make the changes when you are ready.

Despite this, there are things I cannot recommend:

  • Staying stagnant and giving up
  • Engaging in self-destructive behavior
  • Refusing to be open to new experiences

In my last post, I engaged in all of the above behaviors at one time or another, so when I say I cannot recommend them, I say it from personal experience. If you find that you are engaging in one, some, or all of these behaviors, it means you are still working through your grieving process.

That’s okay, but ideally, you want to move beyond the grief at some point because it brings personal peace that makes the pain and frustration more manageable.

So what does it mean to transition into acceptance?

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The First Couple Days…Weeks…Months…


This is a conversation I wish someone gave me when I first received my diagnosis. While it is tailored specifically to MS, I hope some of the thoughts are universal enough for any difficult medical diagnosis.

CW: Discussion of suicide, self-harm, and depression within this post. If you or someone you know is feeling suicidal, please contact Lifeline at 1-800-273-8255. If you are in crisis, text CrisisTextLine to connect with a crisis counselor. You are not alone.


After I got my MS diagnosis I went through a period of shock and relief. I was shocked that it was MS but relieved to finally have an answer. Ultimately, the shock overpowered the feelings of relief and I found that my emotions spiraled out of control.

I don’t remember the first couple days, I think I was numb from trying to process the information: it was like finding out a loved one had died. Every couple of minutes I’d get distracted enough to forget, but as soon as I turned my mind to it, my heart sank and it felt devastatingly fresh again.

The numbness I felt was me unable and unwilling to process the news. 

I was aware of MS since High School because my art teacher had it. I remember my mom telling me about MS, explaining why my teacher may seem fatigued or snappy towards the end of an afternoon class. I also remember sitting in the art room, watching my teacher gush about Cezanne and thinking two things to myself: one, “Oh god, I hope I never get MS;” and two, “it would be the end of my life if I ever got it.”

I was wrong on both thoughts. I may have MS, but my life isn’t over.

So You Have MS

Welcome to Club MS where no one wants membership. 

Right now you’re searching online for meaning and information. There is a lot of information out there and I understand that this post is going to add to the noise. I wrote a simplified post about MS, but I recommend checking out the NMSS for thorough information on the disease if you want specific medical details about MS.

I am not going to offer advice on how to cope with the news of the diagnosis, but provide insight into what I went through to normalize your experience to a certain extent. While working through a diagnosis is unique to each individual, there are certain aspects to the process that is universal. You are not alone in this journey.

There’s a good chance you will go through a range of emotions like I did. Hopefully, relief will be one of them because there is a sense of calm with finally having an answer to what is going on with your body. It makes what is intangible – tangible. What was presumed to be just in your head is now externally acknowledged by a medical professional.

These feelings of relief probably won’t comfort you past the first 48 hours or so. But it is something to keep in the back of your mind for later as you move through your coping process.

The next set of emotions may be frustration and betrayal.

I was frustrated that my body was attacking itself but equally betrayed by it. Here I was, at the end of my 20’s looking at a lifetime of disease; where Ash would have to take care of me if I progressed past a certain point; and I would be a physical, mental, and emotional drain to all of my loved ones.

As a younger person, the idea of having a disease or getting sick was something that happened to other people. I took what was presumed perfect health for granted. I remember thinking to myself: I lived my life relatively well, I was a good person, I did what I was supposed to, why is my body punishing me? What wrongs was I atoning for? This does not happen to good people.

I sank into a deep depression. I was completely lost about what I was facing, how I would face it, and how I would get through it. I felt completely selfish because I could only think about myself. I couldn’t and didn’t want to think about anyone else.

I went to a very dark place and stayed there for several months. There were moments where I was suicidal over the whole situation. If I killed myself, I would regain control of an out-of-control situation. More importantly, I would be able to remove myself from Ash’s life and no longer be a burden to him. The sooner I did it, the sooner he could move on and find a healthier partner.

I never acted on it, never made any serious plans. Instead, I pushed it down the road: if I start to be a burden for my loved ones – then I would do something about it.

I am not saying, nor am I recommending entertaining these thoughts, but by pushing the desire back it helped give me the clarity to healthfully resolve my thoughts on the matter and get to a point where suicide was no longer a viable option at any point in time.

It was around this point that I realized I was going through a form of grieving after getting the diagnosis. Grieving a medical diagnosis for yourself is, in fact, normal. It helped contextualize what I felt in the months after my diagnosis. It also helped me move through the stages more effectively because I now knew what I was experiencing was normal.

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