No one gets sick alone. We are each a part of a vast network of family, friends and humanity in ways that only George Bailey truly understands. Our lives have a ripple effect that moves forward throughout our individual webs.
One of the hardest parts of a chronic illness is seeing the pain my illness can cause a loved one. It can come in many forms. The look away when a friend sees me for the first time walking with a cane or walker. The flinch of disappointment when I turn down an offer to go out again. Sometimes it comes disguised as being super positive, such as when someone tells me insistently that they know someone who has this same condition and they are fine. The truth is maybe the person you know really is fine, or maybe they look fine, but don't feel it. Regardless, it's evident in your concern that the thought of me not being OK is something you really don't want to think about.
So many chronic illnesses have many invisible elements. I have parts that are instantly visible like my limp and cane and/or walker. But there are others less obvious ones. The thing is, as much as I wish you knew about them, I equally want to keep them hidden. I don't want you to really know what may days can be like. It is hard enough to let you see the visible ones. I want so much to hold onto what is left of my sense of normalcy. I want you to see that. When you see me walking in the grocery store with a cart, you don't realize the cart has become my walker. I work hard to have it move smoothly and make my feet walk as they should. And when I succeed, I look normal. I'm just pushing a cart in the store. I love it when I feel normal. But looking normal does not come without effort.
Perhaps the hardest moments come from the fact we don't always don't look sick. I created a meme that says "My superpower is looking good while feeling lousy." It's not so far from the truth. Looking "good" makes me feel better about myself. I try hard to create this illusion. Very hard. Invisible illnesses carry a double edged sword. I am glad that I can still make myself look attractive. What isn't seen is how long it takes or how much energy. I hate the days I have to shower (no I don't always shower every day). It is not an easy task getting into and balancing myself in the shower. Even drying my hair means I have to position myself so that I can stand without holding on to anything and try to not wobble or fall while holding a hairdryer in one hand and a brush in the other. Then there is the make up. The whole process makes me want to go back to bed after I'm finished. My doctor said that one of the reasons I get so fatigued is that my body is trying to figure out how to do what use to come naturally. It's an effort. Now every movement becomes a complicated exercise with unending reps.
The problem is this; if you don't see the fatigue, the brain fog, the shots, the side effects, the fight against depression and you see me as normal, it might feel like a rejection when I don't behave the same with you as I used to. The closer the family member or friend, the more painful it can be. That leaves me with a difficult choice. For me to tell you everything I experience, I run the risk of making you uncomfortable, not to mention it can be really depressing. There is enough of that in life without me adding to it for you.
I can tell you every detail of what it is like to spend a hard day in my body. One when no matter how much I have slept, I have to drag myself out of bed in the morning and still feel exhausted. When I cling to the side of furniture and my cane to stay upright because I'm too stubborn to return to using a walker again, but can't walk properly without it. How when I try to walk, my toes feel as if they are asleep or numb, or better yet, frozen with frostbite and each step is a painful attempt to move and keep my balance without my weight reaching the front of my feet and causing shooting pain. How it feels when my a simple tasks become confusing because my brain at that moment is working like an old computer without enough memory...processing, processing, processing. The times when I can't feel if my bladder or bowels are full and I worry. When my eyes try to focus on the words on the page, but they blur. I adjust my glasses. I blink. I try to read all that I can in the brief second of slight improvement before it blurs again. The defeat I feel knowing I use to be an intelligent, independent and motivated person. The sorrow of being alone, the fear of what growing old will mean for me, and feeling empty.
Knowing this wouldn't help you feel better. It would only make you feel worse. To really understand my pain would only bring you pain. It is better for me to hide it than to hurt the ones I care about. And in time and with grace, my day to day struggle actually becomes a routine for me. Not every day is awful all the time, but there is a struggle in every day. And it's unpredictable. I never know from minute to minute which part of me will shut down and for how long.
Sometimes I do wish you knew though. Like when I can't follow through on things I promised, or when I try to do everything you want from me, but I just can't, or when the strain of acting normal and not honoring my physical limits starts to make me worse, and I have to let you down. I fail you. I hurt you , and that hurts me.
The five stages of grief are denial, anger, bargaining, depression and acceptance. The person who is sick is not the only one who has to go through these steps. Their loved ones do too, and it sometimes take them a little longer, especially when we do too good a job of hiding our reality from them. Acceptance is not an easy space to get to and sometimes we have to do a little cha-cha dance and repeat a few steps along the way. Sometimes we get stuck at a stage for a while. Many never get past denial. But when we get to acceptance, everyone gets to be who they are. It can be a beautiful part of life. The truth is, when we stop fighting or hiding from life, we can start to genuinely live it. There are good days and bad. Both are better when shared. Bad days and hurt feelings happen whether we are sick or healthy. When I let you down, please forgive me. Some days are hard. That doesn't mean I love you less. If I turn you down one, twice, or three times, don't stop asking. I really do want to be there. It's ok to be frustrated with me. I am frustrated with myself too. But when the frustration fades, please come back to me. Don't give up on me. Please give me another chance to make you happy again.
The ripples our lives produce can be ones of pain or ones of hope. Sometimes, by accepting the pain in a shared effort the ripples can still go forth as ones of strength, love and compassion. That ripple is sure to travel far and wide and carry hope.
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.