Facing Holidays with Chronic Lyme
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 realize just how much effort it took for me to pass for “good”.
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 over
all exertion, that often exasperates their symptoms, that they feel the only
choice they have is to stay home. I recall attending church services to sing
carols and being 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 over-stimulation were, and continued to be,
a sensory trigger.
Something
that I would ask of you all this holiday season ~ 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, that 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, chronical
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” and 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 over-stimulation, 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
[Paula is the President of
the MLDSE, the Maine-partner of the national Lyme Disease Association, a member
of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation.
You can reach her at paula@mldse.org]
Comments
Post a Comment