With multiple sclerosis, a little guilt might be under the Christmas tree

Challenges to self-care seem to be parts of my holiday season these days

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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Counting today, there are only 18 shopping days left until Christmas. Unless you’re one of those annoying people who did all their gift buying months ago and won’t stop talking about it, the clock is ticking. I guess that makes me one of those annoying people who reminds you of that. A sort of talking Advent calendar with guilt behind every window instead of candy.

Online shopping is one of the best things to come about in my lifetime. I mean my entire life, not just the part where multiple sclerosis (MS) has limited my mobility. I never cared for holiday crowds before, so the convenience of the internet helps eliminate any guilt or excuse for not getting everyone on my list a gift.

Not to worry, though. There’s plenty of other kinds of guilt to worry about during this season. Unfortunately, there’s a special one for those with MS or any other debilitating condition.

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Navigating multiple types of guilt

I think of it as MS guilt. It’s the guilt of not attending holiday events because of symptoms like fatigue, mobility issues, or the need for special accommodations. Coincidentally, like MS, this type of guilt is multiple, too.

First, there’s guilt about not participating, It’s not as though I was a very social creature before multiple sclerosis, but I still got out and mingled. I was even known to meet a friend for lunch occasionally, or even stay out after 9 p.m.

Now, I don’t do anything spontaneously, and even scheduled events require additional planning and are subject to change. By change, I mean the whims of my MS, which tend to make me somewhat unreliable. I really liked being reliable, the guy who could be counted on to be there. Now I feel like the one who could cancel at the last minute and asks strange questions like “How tall are your thresholds?” and “How big is your ground floor bathroom?”

Then there’s guilt because I feel selfish for taking care of myself when my disease forces me to cancel, or not make plans to begin with. I know I’ve said that self-care isn’t selfish, but it turns out that I’m not that great at following my own advice. I’m working on it, but for now, do as I say, not as I do, I guess.

Finally, there’s guilt about my relief when plans are canceled. Someone cared enough to invite me and made an effort to accommodate any needs I might have. Then on the day of the event, crushing fatigue or another symptom of multiple sclerosis sets in. If I go, I’ll be miserable from the effort it takes to socialize, and like a bad mood, misery has a tendency to spread. I don’t want either to happen, so I feel a weight has been lifted when I decide not to go. It’s the right thing to do, but it feels so wrong.

Despite all that, I still want to be invited. I want to be given the chance to fail, if that makes any sense. It stings a little when friends and loved ones say they understand if I can’t make it, but I suppose they’re just setting expectations appropriately.

Those expectations are actually accommodations made by those who care enough to want my company and make the effort to have it. If I didn’t want theirs, I wouldn’t feel bad when I’m not able to enjoy it. Being included is a form of caregiving, and oddly enough, feeling guilt is, too. In the season of giving, don’t forget that the gift of care sometimes comes in strange packages and goes both ways.


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

Callie Curtis avatar

Callie Curtis

What an honest, kind, realistic article! This is EXACTLY the guilt I feel sometimes, particularly as the time in Dec seems to speed up, and the invitations pile up and the snow and bad weather begin. Thanks so much for writing this!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Callie! Honest and realistic are what I hope to always be. I can't promise my words will always sound kind, but I mean them that way.

I spent a lot of time wondering if anyone else ever felt like I do and writing this column is my way of finding out, Thanks for letting me know that you feel the same. It helps so much.

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Patricia P. Garrett avatar

Patricia P. Garrett

Love your column. I was never a shopper and I love the freedom that I have using online services. I do not have any guilt and have time to enjoy each and every moment.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Patricia! I never have guilt over online shopping for the same reasons. Even before MS, it was a Godsend.

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Merlene Cook avatar

Merlene Cook

I have shared your thoughts with my family. It mimics my life. When I first got MS in 1969, I was told by my doctor to get rid of as many stresses in my life to navigate with MS. This meant removing myself from friends that would push me. Whenever I had a relapse, I exited from life and rested alone until it was safe to join the faster paced life. For 50 years this worked or me. I continued to work during this time ... fortunately, I worked For an accommodating employer. For the past 2 years, I have moved into a progressive stage. I am surrounded with loving people who understand my needs. I have been fortunate throughout my journey ...always returning to 100% after a flareup....... no more but I still put myself first. Giving up on joining events and stressful people was worth it for me. I think of my MS as a twin inside me. She dictates our life and I respond accordingly to our needs. Your comment rang so true for many us navigating this disease.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Merlene! Right after diagnosis, I tried to hang on to my stressors because I thought they'd make me feel like nothing had changed. Things had changed though and doing that made me my biggest stressor.

Thank you for your comments. I think others found them useful like I did.

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Beth avatar

Beth

Thank you for your insightful article. I also have times of "guilt" for not participating in festivities. My husband and I used to throw lavish Christmas parties and I did all the cooking. Now it is a chore to make fudge sauce and attempt to decorate the fireplace mantle. There are days I feel useless and need to remind myself that SPSMS is the culprit, not being lazy or non-interested in socializing. Good friends understand and come and visit. Merry Christmas to you and yours!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Merry Christmas to you too Beth! I suppose we wouldn't feel guilt if we didn't care. I guess that makes it a little more bearable.

Thank you for the comment.

Ben

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Kathleen avatar

Kathleen

I enjoyed this column immensely. I especially liked the bit about asking strange questions like “How tall are your thresholds?” and “How big is your ground floor bathroom?” I laughed out loud. How many times have I wondered how to ask these exact questions and others without feeling it was just a bridge too far . . . so thanks for the validation and the great column.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Kathleen! I don't like that I have to ask those questions, but it's the right thing to do...for everyone. You're so welcome for the validation. Thank you for validating me back.

Ben

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