With MS progression, allowing yourself time to grieve is vital
Finding myself in the dual process model of coping with grief
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.
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.
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Comments
Paul Muddiman
Hi Ben,
I feel privileged to have read your columns for a while now.
Its nice for me to sit and read at mid day during lunch from my work to pick out some really insightful words.
I have been diagnosed now for 30 years and in the early days the library was the only place to get an idea of what was going on.
I wish you well and hope that as best you can I hear from you more.
Best Wishes
Paul
Benjamin Hofmeister
Thanks Paul! Thankfully I do most of my research online, but I'm old enough to remember spending nights at the library in college.
On a side note, I'm sometimes asked why I spend so much time reading and learning about multiple sclerosis. I usually give a quick answer that I don't have much else to do. The reality is that I think it is absolutely vital that I learned as much about the disease and people with it as I possibly can.
Merlene Cook
Always insightful. ' Giving yourself the grace to rest from it. ' I think I do most of my grieving alone. Friends often comment that if it was them ... they would have a ' pity party ' . They admire me for not. What is the point of that kind of party ? Short term. Only a person who walks in similar shoes and close caregivers, provides comfort to my personal grief. Not knowing what the next day will bring and making plans becomes my cross to bare in this chapter.
Kathy Rheault
I have also had MS for 30 years. It amazes me that people tell me all the time how strong I am and that they probably couldn’t do this. I have those days where I’m not strong and feel sorry for myself. I do tell friends and family Primary progressive MS has made me look at life in a different view. Be thankful for today because you don’t know what tomorrow will bring! I also say don’t stress over the small stuff. And then I point to myself, and I say this is the big stuff that you stress about. I don’t complain to people about my ppms and I’d rather not hear people complain about the small things in life.
Benjamin Hofmeister
Thanks Merlene! I also do a lot of my grieving privately. Sometimes with close friends or family, but often if I do include other people it's other people with multiple sclerosis. It's for the same reason as you. People that are unfamiliar with the disease are very likely to want to have a pity party. I think it's because a chronic disease is unfamiliar to most people. There's not a defined end in sight and that seems to be confusing. You're sick, you either get better or you don't. The progressive nature of multiple sclerosis seems to fit neither option and seems to invoke indifference or a pity party in most people.
Lisa Kandel
I did allow myself to grieve for my progression for a short time. I have found in life that you can get used to just about anything. The symptoms I currently have I have become accustomed to. I'm praying when faced with new symptoms that I can be just as gracious. God bless you and may you be a blessing to others!
Benjamin Hofmeister
As always, thank you so much for that Lisa.
Arlene Mowry
Amen Ben! Another truly inspirational post! Thanks for helping me keep my head on straight.
Benjamin Hofmeister
Thank you for that comment! Writing the columns and receiving comments like that is what helps me keep my head on straight.
Andrea Truitt
Thank you for this discussion. I too have PPMS and grieve every progression and loss of ability. I try to fight it rather than give up but the struggle is real. Thank you for sharing your perspective in experiencing this very frustrating and challenging disease. It is nice to hear from someone who understands.
Nancy David
Well said. I agree completely.
Benjamin Hofmeister
Thank you for that Nancy!
Benjamin Hofmeister
Thank you Andrea! They say.. and I have no idea who they are.. that you have to get MS to get MS. I've got it and I get it.
Lorraine Knabe
I totally enjoyed your article. I was diagnosed with PPM 38 years ago. For a good 20 years no one knew I had anything wrong with me. I kept up with my usual activities and never really stopped for anything. I never had any fatigue at that time The doctors had me try a myriad of medications over the years, once again with very little recognition of MS. I used Copaxon for about two years, IV-IG pro for an additional two years and have had two doses of Ocrevus for the past year. I have rapidly regressed in the past 3 years using a walker to get around. However I still d CV more than many women V my age without MS. I do tire easily and have severe fatigue at times. It seems I am heading downhill. Very quickly in the past year.
Lorraine
Benjamin Hofmeister
Hi Lorraine! I too feel like everything is moved downhill very quickly in the past couple years. I sometimes hear people say that they feel like they're MS has plateaued off. Here's hoping we both find a plateau soon.
Heather Cushing
Thank you very much for your wonderful articles. Each of them have been so relevant to my life with MS. For me the grieving process comes with all of the losses I’ve had along the way. This certainly isn’t the life I envisioned at 68 years old. I would love to be active with my granddaughter, sit out in the sun, walk on the beach or around the neighborhood, drive a car and continue my work as a garden designer digging in the soil and planting beautiful flowers. Finding a way to break out of this ongoing struggle with MS takes a lot of courage and work. I’ve been trying to find what I call “micro joys” whenever possible, Small things like birds singing, the breeze on my face, fall leaves on the tree behind our home,… Anything that brings me joy.
Ian
Heather,
I try to be the same with micro joys. Mainly nature - birds, sunsets……
But I wish I could find others who share my anger. A life taken in its prime. I won’t be able to walk my daughter down the aisle or take any future grandchildren to Disney World. I won’t get the retirement I saved for. At the airport last Friday I was sitting in the plane waiting for the wheelchair assistance to arrive - I realised that 99.9% of the population walk as I’m wheeled to passport control. MS is just losses. It’s degrading and humiliating. I only get this one life and MS is a torture that gets worse and worse. While many adopt a more positive approach to the cards we have been dealt, I think it’s just as valid to be furious (at least inside). You get a sense of the end when you attend an MS society meeting. I couldn’t do the man in the electric wheelchair operated by the two fingers which still work. There must be others like me - gutted by the cruelty of this disease.
Benjamin Hofmeister
I had to jump in here Ian. You have definitely found somebody that shares your anger. I've been musing over writing a column about it, but just haven't got my head completely wrapped around the subject. If there was ever a reason to be angry or frustrated, multiple sclerosis is it. For whatever reason though, we seem to be expected to keep a lid on our anger. This sort of goes against my nature which is compelling me to release anger rather than bottle it up.
I think we are supposed to be angry at our lot in life. I think anything less than an occasional release of righteous anger is a lie. Like I said I don't have all my thoughts on paper yet, but I definitely intend to do a column on anger
Benjamin Hofmeister
Thank you for reading and commenting Heather! I like the concept of micro joys. I find myself doing that as well. Lately since the weather has cooled off a little, I find myself sitting on my back porch watching the bird feeder. I'm not sure what the trigger is for people becoming interested in the comings and goings of birds, but I suppose MS is mine.
Sharon Sandoval Starr
Hello Ben, often times I feel like you are writing about me or too me specifically because we seem to be on the same journey as far as progression of MS. I count on your articles not just to educate me, but to help me realize I’m not totally alone in this fight for a life, not just existence. Some days are better than others. I know you know what I’m talking about. I shall continue to keep you in my prayers? Wishing peace…..
Benjamin Hofmeister
No, you are certainly not alone Sharon. Writing these columns is therapy for me because comments from readers like you let me know that I'm not alone. I wish we were not on this journey together but I'm glad you're with me all the same
Tom A
I feel compelled to make some comments as this was my specialty, many moons ago. My experience with grieving is best described as a pail of sadness. To empty the pail, you learn how to grieve. You just focus on one of the grief's aspects, and let the feeling come up. That is best done in a quiet place, secluded, with no one to hear or be aware. A basement if you have one, if you can get to it and no one is home. Then turn on the spigot. Grieve until you can't grieve any more. It WILL stop. You will say to yourself, after a half hour or two hours, "I'm done, this is boring, it is doing nothing for me". The bucket is empty. Things will start to look differently, and you will start to notice things that add grief back into the bucket. You'll learn to control that, such that you are in control, and then when you find yourself "down" or depressed, Why? You'll have to specifically figure that out. When you do, just empty the bucket, you are in control. Bad days will be much fewer.
Chronic grief is what you get when you resist the whole process and try talking yourself out of it without experiencing it. In doing so, you allow yourself to carry a new burden which you don't have to. You might become emotionally numb.
I've always recognized, Bill, that PPMS is a different set of initial stressors than RRMS. But in large measure, both end up struggling with the same issues and even look the same. With RRMS you get to go through the emotional relapse even more succinctly because you believed everything was going to be OK and you thought you had evidence for it. Burned out optimism can be a symptom of MS with too much hope, in my opinion. The key words being "too much". A little is at least essential.
Benjamin Hofmeister
Thank you so much for saying that you feel compelled, because anytime I try to write about a psychological topic, I am definitely trying to compel you LOL. I really like it and I think a lot of other readers do too when you give a professional opinion on a subject that I have to admit that I don't always have the firmest grasp on.
Cindy Thurman
Ben, I loved reading your article, it is the first I have read! I look forward to others coming our way and am going to look up past ones from you. II love it when I read something that is what I have been feeling but haven't been able to put words to. I makes me feel known! Thank you for that!
Benjamin Hofmeister
Thank you so much for reading them Cindy as well as taking the time to comment! You said the exact reason that I tried my hand at writing columns anyway. I kept reading what other people had written and thinking finally somebody put into words the way I've been feeling and I wanted to try to do that too. Thank you for saying that.
Patrick Moeschen
Ben, this one hit home with me. Outstanding column. A lot to unpack and even more to think about. Thank you.
Benjamin Hofmeister
So good to see you over on the dark side Patrick! I'm glad to hear it hit home with you, but sorry it did all at the same time.
Sandra S.
Great post, Ben...."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." So true. And the steeper the loss is, the harder the restoration-orientation is. After a while, it seems like a monsoon: You just can't stop the deluge and there seems to be no re-orientation.
Benjamin Hofmeister
Thank you Sandra! You are absolutely right, the steeper the loss makes the restoration exponentially harder.