5 Ways to Support Loved Ones Affected by Rare Disease During the Holidays

November 21, 2024

5 Ways to Support Loved Ones Affected by Rare Disease During the Holidays: The Perspective of a Rare Mom

By Shannon Bennett, Rare Disease Patient Advocate, & Mom to Kenzie

a woman with glasses and blonde hair smiling

Shannon Bennett
Rare Mom

Believe it or not, the holidays will soon be upon us. Whenever I say that out loud to someone, the response is a toss up between a squeal of excitement or an exaggerated groan. For me, it’s both. The thought of putting up my twinkly lights and bright, cheerful decorations fills me with joy. But in the back of my mind, I know that this happy season also comes with some inevitable anxiety, sadness and isolation.

If someone you love is the parent of a child with a rare diagnosis, or perhaps has a rare condition themselves, here are 5 things to consider this holiday season, as well as what you can do to help. Please keep in mind that everyone’s situation is special and unique, I’m merely speaking from my own personal experience.

1) Flexibility and understanding are gifts.

How we feel: Plans can be stressful. As the mother of a little girl named Kenzie, who has many medical complexities, I always worry about what state we’ll be in when the “big day” comes around. Will we be in a seizure crisis? Will Aunt Shruti have the sniffles? (Something that could take down my entire family and potentially result in an increase in seizures and a possible hospital admission for Kenzie?) What will the set up be like at the gathering we’re hoping to attend – will there be a sensory friendly space for Kenzie to retreat to if needed, or will we end up trying to publicly manage a nuclear level meltdown, smiling politely as we frantically pack up and head for home? In addition to the hopeful excitement, these are all things that run through my mind when I know that we have festive engagements ahead.

How you can help: This holiday season, try gifting your friends and family coping with a rare diagnosis with the reassuring flexibility that allows them to be a part of social functions, but in a way that accommodates their unique set of circumstances. Reassure them that their presence is wanted, and ask if there is anything you can help with to ensure that their family is able to participate. Being open to adapting is a kindness. Conversely, give them grace if they need to bow out

2) Our support network’s time and presence is one of the greatest gifts.

How we feel: The holiday season is busy. There is shopping to do, meals to plan, gatherings to host and attend, school parties to chaperone, all while maintaining hectic daily routines. If you add in complex medical needs, holiday caregiver schedule changes, unforeseen emergencies, hospital admissions, or perhaps coping with the deep, painful emotions that come with the loss of a loved one, it can become overwhelming. Suffocating even.

How you can help: Showing up and holding space for those carrying additional baggage and offering to shoulder some of their responsibilities can greatly reduce stress. This could mean helping with holiday wrapping or decorating, household chores, keeping the kids entertained while mom and dad take a break or or catch up on to do lists. Rather than asking “how can I help?”, try offering specific help like “can I help you (insert specific task) today or this weekend?” This specific offering of help alleviates some of the weight that caregivers feel during the holidays.

3) Remember that traditions do not have to be set in stone.

How we feel: Many of us hold on to our childhood traditions tightly. These treasured memories are part of us and feel important to maintain. However, when faced with a life altering rare diagnosis, these traditions can become constricting and over time may not serve us anymore. Traditions can shift over time. This is especially true for those of us affected by a rare disease who have had to cope with our entire world shifting around. All traditions started somewhere, so new ones can be a great thing!

How you can help: If you notice someone you love struggling beneath the weight of an age-old tradition, help them think of creative revisions to better suit them, while still providing the comfort of holiday nostalgia. Building new, inclusive, holiday traditions is a beautiful gift.

4) It’s OKAY to ask for specific gift ideas for a medically complex individual.

The Bennett Family

How we feel: I know this might be an unpopular opinion, and that asking for specific gift ideas feels unoriginal or thoughtless, but for families like mine it can actually be quite the contrary. My daughter Kenzie is arguably one of the most difficult children on the planet to buy gifts for. She has Autism so novel items are anything but appreciated. She will sign “all done” in the sassiest sign language tone you’ve ever seen, all the while displaying a shamelessly disgusted look on her face. For the gift giver, this can be disheartening. We’ve learned with time and experience that these situations can be avoided by having conversations with family ahead of the holiday. I am always explicit that gifts are not necessary, but also create an amazon list full of sensory items or therapy tools that make great gifts for the insistent gift givers in our life.

How you can help: Do not be afraid to ask for gift ideas when it comes to individuals with unique interests. The end result is better for everyone involved and putting forth that extra effort to find a meaningful gift is the epitome of “the thought that counts.”

5) Hold empathy and respect for boundaries.

How we feel: There are few things worse than family unrest due to new health and safety boundaries to accommodate your child with a rare condition, yourself or any family member really. Opinions on safety measures can clash and cause friction within family relationships. For example, the cold and flu season is a difficult time in our household, as viruses mean increased seizures, and seizures often result in hospital admissions.

To save us all from the trauma, I’ve had to put safeguards into place which sometimes wreak havoc on holiday plans. Knowing that I have the support of those who love us makes it much easier to implement difficult boundaries when necessary to keep Kenzie safe.

How you can help: Change and growth are uncomfortable. Shifting priorities, mindsets, routines and traditions is sometimes difficult and frustrating for everyone involved, not just those directly affected by a rare condition. Your willingness to make adjustments out of the love and support for your friend or family member can fill their holiday season with cheer and hope while reducing stress. And if that isn’t what the holidays are all about, I’m not sure what is.

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