There are many emotions that come and go throughout life with Multiple Sclerosis and one of those is grief. Some people might not recognize their grief, as grief, and mistake it for depression (which often goes hand in hand) or just feeling down/angry/disbelief etc. But grief in chronic illness is real. Some professionals name our grief as “infinite loss” or “chronic sorrow”, as there are things to be grieved over and over again, as we lose different parts of ourselves throughout the disease.
I’m sure you’ve heard of the 5 Stages of Grief, as defined by Elisabeth Kubler-Ross, who did her work for these 5 stages with terminally ill patients. Now there are many other theories on grief as well. As no one person grieves the same way as someone else.
Grief at Diagnosis
Being diagnosed with a chronic illness, especially one as difficult as Multiple Sclerosis can be challenging, to say the least. There are many emotions that someone can experience between shock, anger, denial or numbness. One of the first questions that is sometimes asked, but often thought is: “what about my future?“. What we’re really asking: “what am I going to lose?“
Grief is a reaction to loss. Since there is potential for many unplanned losses with MS, experiencing grief at diagnosis, even if you haven’t lost functioning yet, is common.
Grief Throughout the Years
As our disease course progresses, the losses start to accumulate. This can be in various forms too. Abilities, dreams, wishes, friends, jobs, it’s not only relegated to disease functioning, but to all other areas of life as well. Friends might become distant, a job might be harder to manage, future dreams might be difficult to see coming to fruition and many more.
Since MS is a chronic condition, the grief process isn’t limited to a one time event, which you learn to manage. Instead, it is cyclical. Happening over and over again, with each new loss. It might even happen from day to day, as symptoms are experienced differently.
Acceptance looks different on everybody. As I mentioned above, everyone grieves differently, so what acceptance looks like from person to person will be drastically different. However, there is a way to get there and cultivate resiliency.
- Feel your Feelings. One of the worst things you can do is keep all these charged feelings bottled up inside you. They will come out eventually, and probably not under the circumstances you want them to. Trust me, I tried to keep mine under lock and key for years, didn’t work out so well. Journaling, talking with a friend/family member/therapist, crying, screaming, all can help.
- Manage Stress. One of our biggest triggers to mild flares to relapses is stress. And life gives you plenty of it. So finding a way that works for you to manage it is going to be key. Exercise, going for walks, meeting a friend for coffee, yoga, meditation, creating art, talking (see above) are all great ways of managing daily stress.
- Re-evaluate and Reframe. I get it. This one is hardddd. You’ve heard that saying “it’s not what happens to you, it’s how you deal with it”? This is what I’m talking about. At some point, we all have to get super honest with ourselves about the future, at least if we want any quality of life that is. Look at what is changing, what isn’t, and what potential good could come out of it. Forced to quit a job you hate anyway? Maybe you’ll find something that is more aligned with what you enjoy.
Doing all of the aboves steps won’t make grief (or anger, or depression) just suddenly vanish. What it will do, is help you feel more equipped to manage those feelings and situations when they do arise. This is a lifelong journey, your relationship to grief will ebb and flow as the years progress, as it does with other emotions as well. Just remember, you’re never alone in this.