Family relationships can be fraught with challenges when you live with a chronic illness like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), 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 a loved one who’s living with ME/CFS.
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:
Holiday, Family, and Living with ME/CFS
1. 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 ME/CFS symptoms affect 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.
2. 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.
3. Limit Time with Truly Toxic People
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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 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).
4. 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.
Continue your ME/CFS treatments, such as minding 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?).
5. 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! Spending time with loved ones doesn’t have to impact your ME/CFS recovery or worsen your symptoms.
This article was first published on ProHealth.com on December 20, 2015 and was updated on December 19, 2019
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book. You can follow Sue on Twitter at @livewithmecfs.