You Don’t Always Need to Fix It

I don’t know if you’ve noticed, but most people don’t like a problem without a solution. If something isn’t working correctly, they’d rather fix, alter, or throw it out and start all over than live with “wrongness.” Now, that’s great when it involves garage door openers, burnt-out lightbulbs, or shoddy Wi-Fi, but when it comes to chronic illness, well, that’s something altogether different.

Those of us who live with multiple sclerosis (MS) know it’s a disease without a cure (for the moment), and it doesn’t play by any rules. You can’t predict what it’s going to do any more than you can pluck winning Powerball numbers out of thin air, and that fact drives a lot of well-meaning people bonkers. So, they engage in something called “toxic positivity,” which is the tendency to silence negative emotions or grief and pretend to be happy even when the entire world is falling apart. (Jennifer Powell, a fellow columnist here at MS News Today, has already done a wonderful job discussing this topic. Give her piece a read!)

I’m not saying that being cheerful is bad by any stretch of the imagination. (Heck, read this column of mine long enough, and you’ll see what a cock-eyed optimist I am!) To practice good self-care, we need to guard our hearts and monitor the way we talk to ourselves. We need to make sure we’re protecting ourselves from others’ negativity and encouraging those around us to practice the art of holding space.

If people are holding space, well, it means that they don’t make the moment about themselves. Instead, they focus on someone else. It requires a person to listen well without judgment while practicing empathy and compassion. To hold space for someone else is to relinquish all control, to surrender the desire to “fix” whatever problem is there, and sacrifice the need to give “good advice” or solutions.

If you’re an MS patient, sometimes you just need to vent, to scream, cry, or talk about how awful, sad, frustrated, and furious you feel. Most people find it difficult to listen to all this passively. Instead, they want to tell you about their friend’s cousin’s daughter-in-law who is doing well with her MS or about the new herbal treatment they read of on Facebook. They’ll encourage you to smile and keep on the sunny side of life, and if you’re a Christian like I am, they’ll give you the stupidest piece of advice ever: Remember! God will never give you more than you can handle. (Seriously, have you read the Bible!? God does that all the time. That’s how people grow and spiritually mature!)

Folks who say these kinds of things mean well. I understand that. But their good intentions are getting in the way. Dealing with pain and sadness is necessary, and it serves a purpose. Sometimes, you just have to sit in what I call “the puddle of ick” until you process whatever it is you’re feeling. If you try to jump over that puddle or tiptoe through it, you’re simply postponing the inevitable. MS is hard; it asks a lot of a patient. And there are some days when grieving or being angry is exactly what is required to get through a rough patch. That’s when you need someone who can simply sit by your side and create a safe space for you to express whatever emotions, words, or thoughts need to come out.

If you don’t have a person in your life who is able to hold space, it’s time to ask him or her for it, and for the love of all that is good and holy, don’t try to do so while you’re having a meltdown. Wait until all is well before you talk to the person. Tell him or her, “You know that I have rough days sometimes? When that happens, I need you to simply sit and listen, not talk. I need you to be uncomfortable with me rather than try to fix my problems.” Talk through what that looks like. Tell your friend/spouse/child/sibling what you will need in that moment. It may not be perfect the first time, but anyone who loves you is going to care enough to keep trying. That’s what holding space is all about — creating a good, safe place where we can all work out the kinks and feel less alone in the process.

Think about your experiences with regards to holding space. Have they been positive or negative? A bit of both? Please join our #RealTalkRare challenge and start a dialogue with us and others about this essential topic. Share your thoughts in the comments below, at our social media sites, and in the MS News Today Forums.

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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.