With MS progression, allowing yourself time to grieve is vital

The company I keep has changed over the past 10 years. I used to associate with people who were much like me. We had a similar way of thinking and faced many of the same challenges in life.

I was a part of an upper tier of the U.S. Army, where those with more experience served as guides and mentors to others who were new to that way of life. The people around me were both mentally and physically tough and were unlikely to give up when faced with a challenge.

Now that I think about it, my friend group hasn’t changed that much after all. The biggest difference is that I chose to join the Army, but I didn’t choose to have multiple sclerosis (MS) or to meet any of the friends I’ve made in this community.

Don’t get me wrong: I’ve met some of the most wonderful people in the MS community that I’m likely to ever know. I just wish it’d been for any reason other than MS.

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Each new ‘diagnosis’

One person I’ve met on my MS journey is Julie Stamm, whom I’m proud to call a friend. She’s a mother, author, advocate, and, like me, someone dealing with primary progressive multiple sclerosis.

She has a lot of profound things to say, but in a recent panel discussion about MS, she said something that especially resonated with me. Referring to progressive MS, she said that “each progression feels like a new diagnosis.” I felt that comment so much that it almost hurt.

I’ve mentioned before that when I was diagnosed, the doctor told me I seemed to be taking it well. At the time, all I had was right-side foot drop, fatigue, and occasional double vision. I’d been dealing with those symptoms for several years and was taking them well because I was accustomed to them. In the decade since then, I’ve experienced a lot of disease progression. Too many symptoms have accumulated, and I’ve struggled to accept them all.

Often when we think about grief, the classic Kübler-Ross model of stages of grief comes to mind. Like many people diagnosed with a life-altering disease, I’ve gone through the five stages of grief. And because each new progression of my MS feels like a new diagnosis, I seem to start the process of grieving all over again. Understanding that model has helped me.

Recently, though, I came across a model that’s specifically about the grief that comes with having a chronic disease. The dual process model of coping with grief (DPM) suggests that two stressors accompany a diagnosis. The first is loss-oriented and focuses on the symptoms and physical losses in body function caused by the disease. The second is restoration-oriented and focuses on the stress and grief that come with trying to manage a life with the losses and other changes caused by the disease.

DPM theorizes that people tend to dynamically and unpredictably oscillate between the two orientations. With my MS, I think I tend to spend more time on restoration-oriented stressors and grief, but I definitely get my full share of loss-oriented grief as well.

It isn’t a constant process. The model posits that people fluctuate between active grief and breaks from grieving. Grief, especially chronic grief, can be exhausting. Giving yourself the grace to rest from it is a necessary part of healthy grieving.

“Healthy grieving” doesn’t sound like two words that should ever go together, but there really is such a thing. It’s completely natural to experience the stressors of a lifelong diagnosis and to grieve at the losses they bring. With MS, it’s important to allow ourselves to be sad in response to each change that the disease forces upon us.

Equally important, we need a guilt-free respite from grieving whenever possible. When every progression or relapse feels like a new diagnosis, we definitely deserve a break.

Do you relate to this column? Please share your thoughts in the comments below. 

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.