By Lisa Burdick, MA and Bill Gareau, MHDL
Celebrating the winter holidays is emotionally and physically draining for everyone, but those with ME/CFS and their caregivers can have an especially difficult time. The following seven suggestions are designed to help all those affected by ME/CFS celebrate the holidays within the boundaries that the illness can create.
Holiday Survivors’ Manual
Focus on the meaning of the holiday you celebrate. In this fast-paced, commercialized world the prevailing spirit of the season seems to be RUSH! From Thanksgiving through New Year’s Day the world seems to enter a time warp as retailers and advertisers count off the minutes until the big day arrives. In addition, pressure intensifies to make the holidays extra-special by “buying this” or “getting that.” You can hardly help but believe the message that “if you really love someone, you must buy him/her this (expensive) gift.”
Those with ME/CFS have enough stress in their lives without compounding it with these modern holiday “values.” De-programming ourselves from what psychologist Eric Frohm calls the “having mode” and focusing on the “being mode” is one way to free yourself from this additional stress. Celebrating the holidays in a “being mode” involves introspection and some dialogue with the people with whom you plan to spend the holidays.
Ask the following of yourself and your family or friends: What is the meaning and history of the holiday we choose to celebrate? How does it relate to our lives with ME/CFS? What is the most practical and meaningful way we can acknowledge and celebrate our holiday under the circumstances? This last question should be addressed in light of the special health and financial considerations that ME/CFS often imposes.
Sometimes simply discussing your needs with family and friends can make a significant change in the toll the holidays take on your life and health. Remember, when living with a chronic illness (either directly or indirectly through someone you love) that takes away so much, it is vital that you find something that you can put into your life. Meaning and purpose are such things.
Challenge old traditions, create new ones. Many of our holiday traditions can turn the season into more of a chore than a celebration. Finding a tree, putting up lights and decorations, cooking, baking, fulfilling social obligations, sending cards and gifts-just thinking about all of these traditional expectations can create a sense of overwhelming despair and make the holidays unbearable.
Decide what your holiday of choice means to you and begin to sift through all of these “traditions” (many created by retailers) to find which ones you can do and, more importantly, which ones you want to do. One of the best ways to be good to yourself and make this holiday season special is to create your own traditions. Given your financial situation, your physical condition and your emotional state, decide which things are realistic, manageable and enjoyable. Then, discard or delegate everything else. At the same time, dispose of the guilt you may feel for not celebrating the holidays “right.” Taking care of yourself, in whatever fashion necessary, is right. Knowing your boundaries and staying within them is right.
Put yourself at the top of your holiday gift list. Many people believe that the only proper way to celebrate the holidays is to give extravagant gifts to those they love. It does feel good to give, it boosts self-esteem and self-worth and it is a way to express love and appreciation. However, many times in our zeal to please our loved ones we neglect ourselves. As the popular song goes, “learning to love yourself is the greatest gift of all.” This sort of “selfishness” is not only healthy; it can be vital.
Putting yourself at the top of your holiday gift list doesn’t necessarily involve material gifts (and in challenging your traditions, you may want to incorporate this thought into all your gift giving). You can put yourself at the top of your gift list simply by only doing those things that are for your highest good. Let your inner child play. Challenge feelings of guilt, shame and inadequacy by validating your intrinsic value, worth and beauty. Do whatever it takes to give yourself the gift of peace of mind. This survival tip is especially important for caregivers. Doing something just for yourself can be tremendously refreshing. Try to get away from your “caregiver role” for at least one day. When we spend all our energy giving to others we eventually burn out. If you give yourself something you need you’ll be more helpful to others and feel better about your role.
Allow yourself to receive. Everybody needs to give some-times, for the reasons mentioned above. This means we must also allow ourselves to receive graciously, gratefully and unconditionally. The “Oh, you really shouldn’t have” syndrome is damaging to your self-esteem (it’s a way of saying “I’m not worth this”) and it takes joy away from the giver (“Gee, maybe I really shouldn’t have.”) Sometimes it’s hard to receive when you are limited by ME/CFS. Perhaps you feel you don’t have enough to give back or that you take too much too often already. This way of thinking is like giving yourself an injection of toxic shame. Recognize that the giver chose to offer you this gift and allow yourself to bask in the feeling of love or appreciation that the gift represents.
Once again, this is an extremely important point for caregivers. Caregivers often find it hard to step back and receive because they are so accustomed to giving. However, it is essential that they do so. Caregivers need to hear the healing message that they are worthy of receiving and that they are loved and appreciated, not just for what they do, but for who they are. It is especially important that caregivers allow themselves to receive with their heart from the PWC they support.
Setting boundaries. Many times during the holidays a sense of social obligation prevails, forcing us to spend time with persons with whom we are uncomfortable. In these cases, the “Season of Giving” can mean giving up your right to your own space. But this does not have to be the case. It really doesn’t make sense to keep up illusions that “everything is fine” when you are being worn out emotionally and physically.
Perhaps you’d like to go to your friends’ Christmas parties, especially if they make an effort to let you know that you are really wanted. But you know the party will be smoky, loud and filled with people who have enjoyed too many ‘holiday spirits.” Don’t feel guilty because you are taking care of yourself. Instead, invite these friends to see you at a time that would be more convenient. Or make an audio or video tape and send your holiday greetings to the crowd that way.
If you don’t have the energy to be polite and social, it’s perfectly OK to tell your family and friends that you can’t see them at a particular time. And it’s fine to end a visit as soon as you’ve reached your tolerance level. Your well-being must come first if you are to survive this difficult time of year. Your boundaries may need to temporarily become a bit more rigid in order for you to preserve your peace of mind and avoid a physical and emotional post-holiday crash.
Coping with unresolved family/friend problems. Setting up boundaries becomes increasingly difficult the closer you are to or the more you depend on someone. This can be an issue year-round, but it tends to intensify during the holiday season. Part of this can be attributed to the media and social emphasis on traditional, warm, tender, close-knit families and compassionate, understanding friends. So what do the rest of us, who aren’t part of the Cleaver family, do?
Take some time before the holidays to evaluate your feelings about spending time with close family and friends. Ultimately, you will have to make a choice: are you willing to risk offending someone for the sake of self-preservation or the maintenance of boundaries? This can be especially difficult if you are trying to decide whether to spend the holidays with your caregiver(s) or those you care for.
Perhaps there are some compromises that can be made. Maybe there is a specific behavior or situation that is particularly bothersome but you still value the person and want to be with them. One way to address this would be to simply, yet compassionately say, “I’d like to spend some time with you over the holidays, but I’d rather you not drink (smoke, complain, wear perfume, etc.) when you are around me. I value you, but my condition makes it very difficult for me to be around that behavior.”
Perhaps there are some people you haven’t disclosed your condition to, or worse, that you have shared with only to find that they do not believe in ME/CFS and/or they invalidate, trivialize or dismiss your illness. Again, if you don’t feel safe, validated or comfortable around someone, you don’t have to be around them. Always have a reason to excuse yourself from their presence.
Finally, since we cannot change other people, discover whether there is something about your attitudes or perceptions that you can change to make it easier to cope with these people. Perhaps your New Year’s resolution can be to address these issues, possibly with professional help, as soon as you’ve rebuilt your strength after the holidays. This goal or resolution may give you something to look forward to in the near future, just in case the “here and now” gets too pain-ful.
Don’t let life stop after the holidays. For many people, the end of the holiday season is a mixed sensation of relief, fatigue and depression. There’s not much to look forward to in the bleak months of January and February. Even if all of these suggestions do work for you, surviving the holidays can require a lot of energy, especially for those affected by ME/CFS. Start now to plan something for future months, but keep your plans simple, concrete, obtainable, practical and flexible. Maybe there is a small project you’d like to start or a small goal you can set. It really doesn’t matter what it is; just make it affordable, physically manageable and personally meaningful.
This is a way to continue giving to yourself year-round. You deserve it! This can also help in case your holidays don’t go so well and you cannot avoid the pain they bring. As all those living with ME/CFS understand, having some kind of light at the end of the tunnel can make all the difference in the world.
We hope that these suggestions will help you and your significant others have a peaceful, meaningful holiday season.
Lisa Burdick and Bill Gareau are counselors with experience in treating ME/CFS and other chronic illnesses. This article is reprinted from an archived issue of The CFIDS Chronicle.
CFIDS holiday/birthday/anyday present list
By Judy Kruger
This is a simple-to-extravagant guide for individuals and caregivers looking for gifts that will make life easier for a person with ME/CFS
(items are in no particular order).
- Neck support or full body pillow
- Homemade soup
- Warm socks or slippers
- Kitchen tools from a disability supply catalog or store
- Easy-to-hold “fat” pen or scissors
- Soothing music
- Bubble bath without harsh chemicals
- Novels in large print
- Book of beginner yoga or t’ai chi exercises
- iTunes gift card for an e-book or music
- Envelopes and postcards already stamped
- Gift certificate for a massage, haircut or meal to be delivered
- Cozy sofa throw
- Portable phone
- Bottle of dry shampoo
- Heating pad
- Donation to ME/CFS research or advocacy
- Foam rubber mat for bed, floor, ground, chaise
- Hot/cold headache “mask”
- Snap-on key covers (easier to hold)
- High-back chairs (to support head)
- Help around the house, such as moving dishes and other kitchen items to waist level, moving mailbox closer to front door
- Soft, thin gloves for inside on cold days
- Pillows for armrests of desk chair
- Rolling bedside tray table
- Wheelchair or electric scooter
- Computer equipment
Judy Kruger lives with ME/CFS and is a past contributor to the Chronicle.