(This holiday-focused “Lyme Time” column is being republished due to its popularity.)
Nothing reminds you of your illness more than when you’re limited by the things that you can no longer do and the places that you can no longer go. And nothing highlights those limitations more than the holidays.
Grieving the loss of holiday traditions or feeling like you’re letting your friends and family down by staying home or cutting outings short can elicit so many difficult emotions that no one should have to deal with around the holidays.
No one ever thinks that something as tiny as a tick bite can change their life in so many ways, until it happens to them. I sit with people in person and on the phone who are struggling to understand this disease, struggling to make sense of their new normal, struggling to keep it together for their families. Struggling. It’s something that chronically ill people do constantly. Everything is a struggle. Getting up in the morning, even getting through the day. Trying to plan events. Even something like going to the grocery store is taken for granted.
I remember getting out and going to the store and running into people who would say things like “Oh, you look so good. You must be doing better” without realizing just how much effort it took for me to pass for “good.” They didn’t realize how much energy it took just to get dressed and put on a good face and be seen in public.
While chronically ill people want to be a part of the holiday celebrations, they realize just how impacted they are by it all — sights, sounds, smells, and overall exertion that often exacerbate their symptoms so that they feel the only choice they have is to stay home.
I recall attending church services to sing carols and being so overstimulated by the sounds, smells, and lighting that I had to leave and go back home before a seizure was triggered. Holding a conversation was physically and mentally exhausting — trying to focus on who was speaking to me, what they were asking, and by the time I figured out my response, they were on to another topic. I often wondered what they thought, standing there in front of me — did I look as disconnected as I was feeling on the inside?
The holiday season is, and always has been, my favorite time of year, and as I regained my health, I tried to re-engage with all my favorite holiday activities but found that foods and overstimulation were, and continued to be, a sensory trigger.
Something that I would ask of you all this holiday season is to be kind and give grace to those suffering from chronic illness. Whether you understand their illness or not, understand this: they are doing their very best and that is all that can be asked of them.
If they come, don’t over-quiz about what’s been going on. Instead, welcome them into the group and make them feel as comfortable as you can. For one night, let them feel normal. Let them forget that they are ill.
Understand that as the group chatter volume rises, they may need to find a quiet reprieve to tamper down any rising symptoms. Don’t be offended if they can’t eat what you’re serving. As much as we all love holiday goodies, chronic illness sometimes demands a change in diet to reduce symptoms during treatment. Maybe ask in advance what they can eat. Sugars and gluten are a no-no when putting together treats to give to them.
Along with sounds, lighting can be a sensory issue for those suffering from neurological Lyme. Don’t stare if your guest appears wearing sunglasses. I had someone approach me saying, “What — are you stoned? You must be to wear sunglasses at night.” I was so taken back and offended. Never judge what you don’t understand.
Holidays are meant to be celebrated by families and friends, so I would ask that you please don’t forget those who are chronically ill. They want to be a part of the celebration, but they know and understand all too well their limitations and they don’t want to be a burden to their families, so they think staying home is the answer.
Isolation is never the answer and causes more harm and damage mentally. Reach out in love, send cards, call before you visit, but do visit. And if you bring a gift, leave out the sweets and gluten. Limit your use of perfume and keep the setting quiet. Limited the overstimulation; keep the conversation light. Share what’s going on with you and make them feel included. This will ensure a heartfelt and thankful visit and it will serve the one who is ill in ways that you may never understand.
This holiday season, remember those who are ill and not able to attend functions. Do your part, however small or grand, to make them feel remembered, missed, and loved. This feeds their spirit — and spirit is something that no disease can ever touch.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at paula@mldse.org or go to mldse.org for more information.)
