You Don’t Always Need to Fix It

Jamie Hughes avatar

by Jamie Hughes |

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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.

Comments

Leanne Broughtonu avatar

Leanne Broughtonu

i like that, holdng space. My husband says he feels so helpless and isn't good at showing his support. But he is there and listens to me cry. I have trouble talking about it because it makes me cry, even after 23 years.

Reply
Jamie Hughes avatar

Jamie Hughes

That is a PERFECT example of holding space. Tell that man of yours he is doing a GREAT job and to keep it up.

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Katy avatar

Katy

Thank you for this article! As a fellow Christian, it’s hard sometimes to combat the “positivity” mindset with the reality of living life in a fallen world. As for the “God will never give you more than you can handle”, I like to tack on “without Him!” The spiritual growth that comes from relying on him in challenges (ms or not) is huge. Thanks for your thoughts.

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Jamie Hughes avatar

Jamie Hughes

Thanks for commenting, Katy. You've hit it exactly on the head!

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Rosemary Newbery avatar

Rosemary Newbery

So good to read this article and comments, especially as a fellow Christian.

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Jamie Hughes avatar

Jamie Hughes

I hear you, Rosemary. Be well!

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Carolyn Walsh avatar

Carolyn Walsh

Thank you for writing this message.
It is going to be very helpful for me.

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Jamie Hughes avatar

Jamie Hughes

My genuine pleasure, Carolyn. Glad it resonated!

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Pat Thistlewood avatar

Pat Thistlewood

Your article may have just saved my life! I diagnosed myself in my 20’s when not one doctor believed me. After 40 years I told my orthopedist that I have always thought that I had MS. He said no, you have degenerative disc disease. I finally convinced my nurse practitioner to send me for an MRI to test for it. Days went by and I finally called her for the results. I was right all these years! I’ve been suffering since childhood and not one medical professional would believe me. What started with relapse/remitting had transformed into PPMS. I’m still trying to find the right doctor to treat me with respect for this disease. God help me!!

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Jamie Hughes avatar

Jamie Hughes

Pat, that is sadly still a common occurrence with MS patients. :( I'm so sorry it took folks so long to figure it out. I'm glad the article helped you, and I pray that you find the right medical team to help you solve some of the challenges that come with this disease.

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Ni jones avatar

Ni jones

Thank you Ms.Hughes…..bravo
But I also thank my sister who is a remarkable WARRIOR…
I must do better with “holding space”….She is
By far the epitome of “holding space” !!! I love her….
I hear you!!!!

And hopefully learning ……

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Jamie Hughes avatar

Jamie Hughes

I love that you're aware of it and want to help in that way. Bless you!

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Bill Kincaid avatar

Bill Kincaid

Thank you for your knowing comments. The older I get the more accepting I become of my disease. But there are days when I reflect on times past. My wife holds my pace; she is great!

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Jamie Hughes avatar

Jamie Hughes

So glad you have a warrior at your side, Bill. Be well!

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Joann Campbell avatar

Joann Campbell

I as well have thought for years that there is a problem with my body. Now in my 70,s find out I have pmr an autoimmune inflammatory problem now 2nd brain scan with 1 lesion at first scan no results yet with 2nd scan maybe some answers finally.

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Jamie Hughes avatar

Jamie Hughes

Getting answers is both hard and helpful. Keep your chin up, friend. There are good days and bad for sure.

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Ron avatar

Ron

In my 33 years of having MS, I made them the most successful years of my life, including having a beautiful marriage, three beautiful boys, three amazing houses, passing the CPA Exam, a high powered position of leadership, and an ability to survive 911 WTC for over 14 years until I retired with over 30 years. I am happily retired and exercise every day!

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Jamie Hughes avatar

Jamie Hughes

Ron, that is beyond AWESOME! I stand in amazement of all you've accomplished. **highest of five to you, sir**

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Gisele Hebert avatar

Gisele Hebert

Hi! Thank you for the article. I feel more confident in talking with my husband about “holding space” now. I think a lot of people would benefit from reading that no matter what side they are on. Thanks again!
In response to Pat T: If you are in or around the New Orleans area Dr. Bridget Bagert at Ochsner is my Neurologist and she is phenomenal.

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Jamie Hughes avatar

Jamie Hughes

It is my pleasure, Gisele. It's a hard conversation to have, but a very necessary one. When it's approached in love, it won't fail. Be well, friend!

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Brian O'Neill avatar

Brian O'Neill

Hello, your article of "holding space" is very real. Us mser's want to make every thing ok--thats who we are and my (and a lot of others)! I"ll ask my wife tonight if she'll hold. Thank-you for writing this.

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Melissa avatar

Melissa

Thank you for your words; I am right there. One of my best friends was diagnosed almost 10 years before me. When I was diagnosed, I felt I couldn't talk about my problems cause I felt that she would think I was taking attention away from her. I cannot talk to my sister because she wants to "fix" me or offer up herbal remedies. My feelings and thoughts mean nothing to her. Most of our conversations are me just listening to her. I have friends but I don't feel they want to hear my problems as they have problems of their own. I'm divorced, have no kids, no parents, and only one sister that doesn't know how to listen. I'm struggling with all the negativity in the world around me. I need to find that someone that will "hold space" with me. I've tried group therapy, one-on-one therapy, and even a mentor with MS, but none of these have quite fit my needs.

I truly appreciate your article and now have a better understanding of what I should be looking for. You have given me some hope that there could be someone out there that understands me and could provide me that support.

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