by Suzanne Burnett Stewart
The holidays are hard for many people especially those in pain. Also for people with depression, chronic illnesses, invisible diseases and disabilities; the holidays are filled with exhaustion, exasperation, loss, loneliness, pain and so on. Everyone would love the perfect picture holiday with the warm fireplace, the loving family all around, the dog sleeping on the floor and the cat on the hearth. People wish for all kinds of things from true love to toy cars. But most of all, everyone pretty much wants the same thing: a quiet, peaceful home with a loving family all around to celebrate – and maybe even feel well for a few days.
While others are out participating in the hustle and bustle of the holiday frenzy; those of us with chronic pain are still living and coping with our illnesses. We are still in pain while trying to do all of these “things” that are expected of us. Our children, our families and friends may indeed love us, but they all want Christmas to arrive in all of it’s glory, regardless of our pain and fatigue. The things that we live with on a daily basis do not go away for the holidays. We don’t get a “holiday vacation” like everyone else does. We must push on, endure and put a smile on our face. When we really feel like sleeping, wincing, sitting, resting and sometimes just crying. My advice for all of us living with chronic pain, invisible illnesses and unrelenting fatigue; is that we need to take “time outs”. Take a look at the large picture for a moment and break it down into small increments. Take on one task at a time and stop when you feel the need to stop. Don’t push yourself, as that’ll keep the pain cycle going. Please stop and rest; give your body a chance to mend for a few hours or take the day “off.” You are allowed to do this, no matter what your conscience tells you to do.
There are many of us with chronic illness, who also have invisible illnesses, such as Dysautonomia/POTS, CFS/ME and/or PTSD. It feels as though these illnesses are rarely acknowledged. We need to make sure that we take care of ourselves first, especially during the holidays. This means that when we feel the fatigue coming on, STOP right away! Don’t keep going until it takes much longer to recuperate. There are those who may have MN’s in their family or group of closest friends. That stands for “Malignant Narcissists.” Those are the people who always put their needs ahead of yours. Stay away from them, keep your distance!! The MN’s use the holidays as a time to preach, cause hysteria, pain and grandstand. They are like vampires and will suck the life right out of you if you allow it. You “feel” as though you don’t have a choice, but you really do!! If you are trying to avoid conflict by pretending that it’s “OK” or “not that bad;” then you will end up with increasing pain, more fatigue, internal conflict and much more than what you bargained for. You’ll never get what you think you deserve out of those relationships. They won’t ever be “warm and fuzzy.” They will always put restrictions on you, rules for you to follow. It may be outward or it can be mind games that they play. If you cannot physically get away from them during the holidays, if you must be at the same gathering…..emotionally leave the room!! You need to do this for your own mental and physical well being.
We don’t all have families with the “chestnuts roasting on an open fire” kind of holiday. Some of us get “Jack Frost nipping at our noses!!” We may not have the “Halls decked with holly and people kissing under mistletoe.” Because in families with “MN’s” you will forever have “Grandma getting run over by a reindeer” and many, many games!! If you MUST spend the holidays with these kind of people, if this is your family tree, then the name of the game is “keeping sane and learning to survive.” It’s not about having fun and singing Christmas carols, it’s about surviving the “Big Chill” that you feel in their presence. Be there if you must, in your body, but make your mind be someplace happy and do not get into conversations with them. You must protect yourself and your children. Don’t say “Oh it’s not that bad,” or “they didn’t mean it that way,” or “you don’t understand them like I do.” Because YES I do! I’m trying to help you make it through the days when we are supposed to be “laughing all the way!!” Usually it is the narcissists, who are “Laughing all the way” and they definitely know what they’re doing. When you can stay away, then do it. When you can avoid inviting them into your life, please do so! But when all else fails,”leave the conversation” at least in your heart, mind and soul. Though your body may be there, you don’t have to be!!! Try to never have the party at your own house when you have MN’s for relatives – because then you are trapped and you cannot leave or get away. They will know they have you like a spider has a fly in his web. All you can do is squirm and squiggle but you cannot leave!
Try to take a step back during the holidays, make a personal space boundary. Keep your distance and stick by those who will not persecute you, make fun of you, be nasty or hurt you. The “MN’s” can get you upset, angry and crying; then fly to “save” you. Those who say the word “love” but never know how to really show it, except with unloving examples of unkindness; along with displays of abnormal affection; don’t truly know what “LOVE” is. They aren’t thinking of you, your pain, illness, or your feelings – and they don’t see what they are doing to you or your quality of life. The honest and only way to avoid the pain of the holidays with Malignant Narcissist’s, is to be with only those who truly love you back and with whom you trust. People who truly love you and won’t hurt you – at least not on purpose.
Try to enjoy your holidays with a smaller amount of people in your circle. If you are living with chronic physical pain; the emotional pain and stress can take its toll on your body even at a higher rate than usual. There are loving, calm and quiet things that you can do with your own “little” family. You can look at lights in the neighborhoods, order pizza and watch holiday movies. But remember that life is not normally like those holiday movies filled with “perfect” families, etc. Unfortunately, we have to learn to survive and help teach our children not to be controlled by the MN’s of the family and friend pool. Life is so much more “choice” than you might think. You don’t “HAVE to” do much of anything that you don’t want to do, except to try to survive. Love those who are lovable and who love you back. But I don’t mean to stop loving the unlovable. I just mean to love them from a distance so that you cannot be “touched” by their damaged spirits or hurt by their abuse.
Good luck, and don’t lie to yourself, we all know that fruitcake really stinks! Just because it is a “holiday” thing….you don’t have to like it or eat it….so just because they are your “family,” you don’t have to like them or spend time with them unless you want to!! Enjoy your holidays as much as possible and take care of your family, your children, your fur babies; and most importantly, yourself!
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).