What not to say to someone grieving their multiple sclerosis

If I were to ask a random person to name the favorite catchphrase of Charles M. Schulz’s character Charlie Brown, the answer would almost invariably be “Oh, good grief!” Although Charlie used it for any number of situations and possibly in place of something stronger, he may have had a point.

Now, I personally don’t use the word “good” very often when describing grief because it’s a little hard for me to think of it that way. I prefer “healthy” or “natural” grief instead. But the reality is that the process of grieving is actually a good thing.

Until I was diagnosed with multiple sclerosis (MS), I thought the grieving process applied only to those who’d lost a loved one. I’ve since found that life with the debilitating symptoms of an incurable disease comes with feelings of loss that are another form of grief, and just as valid.

National Grief Awareness Day on Aug. 30 is designed to help us acknowledge and understand this set of feelings. Rather than focusing on what to do to support someone who’s grieving, I’d like to focus this year on what not to do, or specifically, what not to say.

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My thoughts on what not to say could be applied to any type of grief, so when I found a recent Verywell Mind article on the subject, I had an easy time applying a few of its points to life with MS. I’m not implying that people shouldn’t support me or attempt to cheer me up as I grieve. I just want to make the point that there’s a wrong way to do that, so I’d like people to stop saying the following:

“I know how you feel.”

My answer to those words would be “No, you don’t,” because everyone’s MS experience is unique to them. Even if we both had the same type of MS and the exact same symptoms for the exact same amount of time, I’m a unique person and deal with all of it differently than anyone else.

Further, when anyone says they know how I feel, I infer that they think I’m suffering the wrong way or not suffering as they would. Besides that, I don’t want anyone to feel exactly as I do because it doesn’t feel great, and despite my otherwise having a good life, I wouldn’t wish multiple sclerosis on anyone.

Here’s another: Even though I know what they mean, I don’t want anyone to tell me, “At least you had time to prepare.” I’ve had four shoulder dislocations. The last three happened suddenly and were painful, but those don’t compare to the first, which happened during my Army training.

With that one, my watch and wrist became tangled in the lines of my parachute. Once I was on the ground, a gust of wind hit the parachute, stretching out my arm and popping my shoulder out of its socket. It may have been more psychologically than solely physically painful, but I can assure you that watching something happen slowly and not being able to stop it was definitely not less painful than having it happen quickly.

That segues nicely into my next point, which is to please stop telling me, “Be strong.” Compared with a physical and visible injury like a dislocated shoulder, grieving over a lot of invisible symptoms may seem strange. But when what we mourn is unseen, the pain is also invisible. And whether pain is seen or unseen, it’s hard to be strong and hold it all together when what I need is to fall apart and grieve naturally.

Finally, please don’t tell me, “You need to move on.” Whatever a person means by that statement, I feel it minimizes my experience. No one “moves on” from grief. It’s a lifelong process and doesn’t have a stopping point. As people learn to handle grief, it may seem to go away, but it never really does. When trying to process a disease that changes as frequently as MS does, there’s absolutely no moving on or getting over it.

If I sounded overly harsh in my responses, it’s because I still have some guilt. I picked those four points from the website because I’ve said all those things myself. My words here are advice for anyone who doesn’t know better — and chastisement for myself.

Let yourself grieve your multiple sclerosis, and encourage those nearby to allow you to do it.

If you haven’t already, I encourage you to join the forum on this website. We can chat there about this topic or any other you want to discuss. I look forward to seeing you there.

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.