While family relationships can be challenging for those of us with chronic illness all year round, the holidays bring special challenges, including being together with a large group of family members all at once, some of whom may not be very supportive of you. Over the years, I have moved from bitterness and resentment and dreading family gatherings to once again enjoying the holidays with my family. This article includes some tips for managing this holiday season...and maybe even enjoying your family for a change!
What has worked for you?
Managing Family Relationships – Holidays and Beyond
Family relationships can be fraught with challenges when you
live with a chronic illness, especially one that is often invisible. I speak
from experience, as two of my family’s favorite coping mechanisms are denial
and avoidance! Though some of my family members have been supportive of me
since I first got sick, many others still never mention my illness and pretend
everything is fine.
It took me many years to realize they were acting out of
denial, that they really did love me, and in fact, their denial may even be
based in how much they love me because it is hard to accept that a loved one
will never recover. Also, some people just feel uncomfortable and don’t know
what to say or how to act when faced with chronic illness in a loved one.
With the holiday season in full swing and lots of family
gatherings, here are some of the things I have learned over the years to make
spending time with family less stressful and more enjoyable:
Try to Explain – Once
(maybe twice)
When I was first diagnosed, I sent out an e-mail to family
and friends, explaining what ME/CFS was and how it affected me. After one
horrible family vacation, I sent a long letter to one influential family member,
explaining how their (non) actions made me feel. Things got better after that.
Try explaining to your family how your illness affects you, though it’s best to
do this before the big holiday dinner.
Don’t get overly emotional and stay away from blaming. Just explain in simple
terms what your symptoms are and the things they might see when you are
together – perhaps you need to take naps, you can’t be too active or you get
sicker, you have dietary restrictions (and why), or how just talking wears you
out. Stay positive, matter-of-fact, and brief. Explain that you don’t want pity
but just want them to understand your limits.
Accept That Some
People Will Never Get It.
It took me many years of therapy and stress, but I have
finally accepted that some family members will never get it – they just don’t
have the emotional coping skills to deal with my illness in a healthy, honest
way. I am OK with that. Certain people are never going to ask how I’ve been
(for fear of what I might say!) or if I need to rest. Interestingly, though,
since I gave up my expectations, some of them have surprised me in small ways.
I learned that I can’t control their actions, but I can control my own response
to them. Acceptance and peace feel a lot better to me than constant angst and
bitterness.
I have also found that while the older generation may be a
lost cause, I have great hope for the younger ones! Though their parents may
not say anything about my illness, I always try to be upfront with the kids in
my family. When they ask me questions – like why I need to nap or why I’m not
eating dessert – I explain to them in a simple, straightforward way with a
positive attitude. My niece was delighted to learn that wearing a heart rate
monitor allowed me to have fun with her outside (within my limits) without
worrying about getting sicker the next day!
Limit Time with Truly
Toxic People
Though you can accept that some people won’t ever understand
your illness, there may be people in your family who are truly harmful or
abusive to you. In that case, it is best to limit your time with them and keep
things on a light note when you are with them. Perhaps there is someone in your
family who accuses you of “faking it” or someone who yells at you to just get
up and do more. If you have already
tried (once, maybe twice) to explain your illness to them and they persist, it
may be time to just avoid them when you can. I am fortunate not to have anyone
truly toxic in my family, so I decided that my family was important to me and
that I could accept their avoidance behaviors because they aren’t harmful to me
(once I changed my own responses to them).
Take Care of Yourself
When you are with family, take care of your own needs and
don’t expect others to do so. I have found that low expectations are the key to
good family relationships! Don’t expect much and you won’t be disappointed –
and you might just be pleasantly surprised. Enlist someone close to you who
understands your illness – perhaps your spouse or child – if you do need help
during a family gathering. Mind your dietary restrictions without making a big
deal of them, eating what you can and leaving what you can’t. I might ask the
cook if the gravy contains milk, but otherwise I take care of myself. After our
Thanksgiving meal, I quietly went upstairs to take my nap – my 16-year old
cousin had kindly offered me her bed when I first came in that day (see what I
mean about the younger generation?).
Relax and Enjoy Your
Family!
Once you have let go of unrealistic expectations and
accepted your family members as they are, it’s time to just relax and enjoy
your family. I may not be able to help in the kitchen, but I can sit in the
living room with my feet up and watch football with my family or sit and talk
to my cousins…and go to a quiet room to rest when I need to recharge. Try
bringing photo albums or home movies to look at during a family gathering so
there is some quiet time built into the day for everyone.
Find a role for yourself. In the past decade, I have become
the de facto Family Photographer. Photos and memories have always been
important to me, so it’s a natural fit. I may not be able to participate in the
post-dinner football game outside, but I can sit on the sidelines and take
pictures. At the end of every year, I put my photos on a DVD (with my laptop
while sitting in the recliner!) and give it to family members as a gift. When
my niece and nephew were younger, I used to love to cuddle up with them and
read to them – I even brought my own stack of holiday-specific picture books
when we got together. They loved it, and so did I. Focus on the things you can do, rather than on your limits.
Enjoy your family gatherings this holiday season…and all
year round!
4 comments:
It's good you were able to find a balance in your family and that it ends up working out.
I guess in some ways I am lucky that I don't have to deal with this type thing now that I have almost no relatives left. It used to bother me, but now I've come to see it as a blessing because I get to spend a quiet and peaceful time at home during the holidays where I don't have the drama and awkwardness of family gatherings. Nobody has to contend with my expectations and likewise I don't have to contend with their expectations of me.
I'm glad things have worked out for you...but I do hope you have a "found family" - some friends to provide comfort, support, and fun!
Thanks for taking the time to leave a comment.
Great! Staying away from toxic people is easy during the year, but not in the holidays. You're right....some people will never understand.
Sad but true - it's a tough thing to admit. Luckily, most of my family has come around to some degree - though it has taken 15 years!
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