Believe me, I know what it’s like to feel that heavy, perpetual weight of chronic illness on your back. I know how it feels to put that label on like a coat and hide within it. I know what it’s like when you feel as if you’re about to become completely smothered by the monstrous mass of it all. I know. But there is a light because with awareness comes clarity. So you feel crappy, and it’s the holiday’s- what can I do to help you feel better about yourself and your life?
Here we go. The first thing that needs to happen is you need to acknowledge you hurt. Life is hard. You have a chronic illness and it absolutely will keep you from having the ultimate amounts of fun and activity during this holiday season that you may be used to experiencing, and that sucks. The thought of that is painful, yeah? Acknowledge that, because that hurt is your hurt and nobody else’s. No one will feel your hurt for you, it is such a personal part of each of our lives, and such a visceral sensation that when you think about it-you would never want someone else to experience your hurt for you. Now that you’ve acknowledged it, hold it in your mind’s eye, focus on it, and-quite simply-release it (or drop it). That hurt won’t do you any good just sitting there, growing.
Now that you’ve let go of the hurt you can make more room for envy, jealousy, resentment, self-pity. Chronic illnesses are nothing if not ugly. Sure, most of them present as invisible, but it’s what happens inside our bodies, our minds, that can really tear us down. Anybody struggling with a chronic illness knows that you won’t ever get physically healthy again if you are mentally and emotionally unwell. Fighting a chronic illness takes unprecedented amounts of strength. It is inevitable that during this season of joy and reflection, you will find yourself having to miss out on things. Maybe you will be envious of the time your significant other gets to spend with your grandchildren while you lay in bed with a headache and joint pain. Perhaps you will feel jealousy towards your friends who all get together and go out for drinks, but you can neither drink nor leave your bed due to chronic fatigue. You may find yourself resenting your body for its chronic nausea and its inability to partake in the family feast. And you just may lay in bed to throw yourself a pity party, even if you maybe could get out and enjoy some brief but precious moments of family fun.
These feelings are only reflexes to the pure frustration of life with a chronic illness. Feeling them does not make you a monster, we are all only human in the end. The goal, though, is to drop those feelings and focus on cultivating joy and compassion for yourself and for everyone around you, too. You first need to realize that it is not you who is sick, it’s your body. What makes you, you, is still there within you. You still have the ability to mentally, emotionally and intellectually partake in things regardless of your physical limitations. Would you wish your chronic illness upon your significant other so that instead of bonding with your grandchildren they are stuck in bed with you feeling miserable? No, of course not. Would you wish your friends to all be so tired that even a group text would be too much work? Never. Would you rather nobody enjoys the family feast either, thus creating a lot of waste and disappointed people? No way! So why is it that we often find ourselves throwing a pity party in the middle of such joyful times?
Breathe in all of the positive energy you can summon and focus on the joys that your family and friends are having. Breathe out all of that dark, negative, useless energy that you’re holding onto. Breathe in, the glow of pure love as your significant other tells you about how much you grandchildren have grown. Breathe out, all that negative energy and envy you were holding onto. Breathe in, the laughter your friends will have together that you will share in again soon. Breathe out, the negative jealousy you held towards them even though they did nothing to deserve it. Breathe in, the sounds of your family enjoying their food and each other’s warm company. Breathe out, the negative resentment you hold towards your body for holding you back from that experience. Breathe in, self-love- you have the best excuse in the world to lounge in your bed, take a nap, avoid all of that icky, cold weather, watch your favorite holiday movie again– all completely guilt free. Breathe out, that negative, nasty, sticky self-pity that keeps you in bed for the wrong reasons.
It is so important to recognize that, once again, it’s not you that is sick. It’s just your body, and so this is your lot in life. Not everyone will always understand, and not everyone will stick around, but the ones who do are the ones who will never resent you for being exactly who you are- somebody who must deal with a chronic illness, completely against their will. Once you cultivate the joy and compassion for yourself and others you will start to see how happy it can make you. Once you let go of all of those negative feelings you’ll see how free you feel, and maybe- just maybe -the simple act of letting go of some of that negative energy will have reduced some of your physical symptoms and you’ll feel well enough to partake in some holidayness.
The next step to surviving the holiday’s is knowing your body. This is so important. If you have an inclination that going out for drinks to catch up with old friends is a bad idea, then just don’t do it. You’ll be disappointed, but how would you feel if you went and you exhausted yourself to such a degree that it knocked you out for the whole next day. If the smell of food cooking, or even just the idea of eating makes you painfully nauseous-then simply remove yourself. When you’re physically low, you’re mentally low. There is no reason whatsoever to overdue it. You need to know your limits. With technology how it is these days, there’s no reason you can’t partake in almost every family gathering via skype, texting, phone calls, etc. Sometimes what it takes to find the balance of joy in the holidays and the joy in your chronic illness is some major compromising. And those who love you and understand you will be there to support you 100% and help how they can.
It is immensely important that, to survive successfully, you understand the difference between loneliness and solitude. Loneliness is the pain of being alone-it can be egged on by envy, jealousy, etc. Solitude is enjoyment of being alone. Do you see the difference? It’s very important. If you’re cultivating positive solitude, then you are content with yourself, happy even. Spending time alone will be enjoyable, you will grow to crave it at times. Loneliness is steeped in self-pity and thoughts of ‘wishing things were different’. Some people who suffer from chronic illnesses will feel more alone in their day-to-day lives due to the isolation that the stigmas of being a ‘sick person’ can carry, but that feeling will be increased ten-fold during the holiday season. So cultivate that kindness and compassions towards yourself, and learn to revel in the joy of solitude.
Last but not least is good communication. Not just with your loved ones, but with yourself as well. To prevent disappointment all around you need to be honest with yourself: ‘can I do this? Will I feel well tomorrow if I go out tonight? Is it worth going out to dinner with everyone if it means I have to miss many if not all the activities tomorrow?’ Once you’ve told yourself that you won’t be participating and you’ve come to terms with that fact, you need to be honest with those you love. It’s important that while your illness is hardest for you, it is still very hard for others as well.
I’d like to close by saying thank you to two authors that have helped me on my path to enlightenment while chronically ill—no, I am not naturally this awesome and calm—Brene Brown and Toni Bernhard, authors of Power of Vulnerability and How to be Sick, respectively. I know that life is hard, and living with a chronic illness can be a debilitating experience, but use your strength to the best your abilities to see the bright side in it all. Because there is a bright side; life is beautiful. Open your eyes and enjoy the season, love is all around.