I have had symptoms of Scleroderma and Sarcoidosis since 1992, at age 21. I have a mental library of well intended statements that have only made me feel worse when said to me by others tying to help. I have no intention of climbing on my high horse and pointing at everyone else. I have stuck my foot in my own mouth enough times to know what beverages to pair with my own foot.
I would like to address the following myth, “Things can always be worse, so we should feel better.” Yes, it’s true, anything can be worse, but who is the authority on what is worse? And if so, I don’t think anyone would object to my call for the immediate disbandment of such an evil organization. I’m about to bust this myth wide open in as concise a way I can.
I call bullshit. I’m going to tell you why by using using an all time military classic dish, SOS.
We all have plates. They start off empty and as we journey through life our plate accumulates things that will make us strong. A form of protein, like things our family teaches us, a few brussel sprouts like the friend who stabs you in the back but eventually, we wiggle the knife in our back free and begin to heal with some chicken soup and Jell-O and life goes on.
Out of nowhere, we can be served a heaping helping of SOS. That’s right, Shit on a Shingle occupying a spot on our plate as a chronic or fatal illness or disability. Everyone reacts to their SOS differently. Some of us can dive right in and are able to swallow and process it; some of us start with the toast and slowly work our way through it; and some of us let it sit on our plate while it gets cold and becomes more difficult to eat the longer we avoid it. There’s no dog to feed it to under the table. We can’t hide it in a napkin and sneak it to the bathroom to flush it. We have to eat what’s on our plate. Often, before we have enough courage to swallow what we are dealing with, life show’s up with another helping of SOS. Next thing you now you find yourself with a full plate of SOS you try to push away in vain, hoping life won’t notice and serve up some dessert, but alas, “You can’t have any pudding if you don’t eat your meat.” (Pink Floyd, The Wall)
Eventually, you decide to start talking about your plateful of crap to someone. You hope to get a little validation and some encouragement. You hope to hear something like, “Yes, that is the text book picture of shit on shingle. I can see why you are having trouble. I’m here for you and I will hold your hand.”
But instead, your friend looks at you and says, “That’s just some beef and gravy on toast. It’s not as bad as you think. It could be worse. At least that’s not haggis.” But, your grandmother was from Scotland. You love haggis because it reminds you of her and you find yourself wishing for haggis. Good intentions gone bad.
Once, I talked to a family member about a recent diagnosis of major depression. Their reply, “It could be a lot worse. It’s all in your head. Cheer up.”
I still wonder if the person who said that to me believed that by saying, “Cheer up”, my depression magically became euphoric thoughts of unicorns, rainbows, and non-fat-calorie-free cup cakes and cake pops.
Life hands everyone something that’s tough to swallow. We are here to help one another and show each other support. It’s not a contest of who has it worse. It’s a waste of time to judge the degree of “bad” of someone’s situation. We cannot possible know how things truly are for others, unless we take a walk in their shoes.
How can we cope with good intentions gone bad? How can we answer words meant to comfort us without blind rage and obscenities? Maybe the same way you get to Carnegie Hall, practice. Everyone has to cope in their own way. It’s not a one size fits all deal, just like a chronic illness like scleroderma. I can share what works for me. It’s not always easy, but when I hear these well intended words gone wrong I remind myself those who trying to comfort us with good intentions gone bad do it from a place of love. It has taken a lot of practice for me. It has gotten easier with time. It helps me when I try to put myself in the shoes of the person who is trying to comfort me. I think about how hard it would be to know what to say to someone I love who is in pain. Someone I want so desperately to be able to wipe away their pain like a Jedi Mind Trick. “These are not the droids you are looking for.” And just like Obi Wan I would want to wave my hand and say, “Your pain is gone and you are no longer sick.”
It’s hard to know what to say when we don’t understand a person’s condition. It’s not fair when we have so much SOS on our plate. It’s not fair that those who love us feel overwhelming helplessness, but with a little help from those with a plate full of SOS, we can help our loved ones with some tips. We can look them in the eyes and in the most loving way possibly, tell them the most helpful thing they can do for us is just being there. Show them links that will educate them about your condition. Let them know their presence helps us, their listening ear on the other end of the phone; a text, joke or silly statement makes us smile. They may be helpless to cure us, but they can be empowered to heal our hearts with a touch, a word, a look, a smile and even a laugh. Laughter heals my soul when I am feeling my worst. Think about what heals you or try some things and find out.
Speaking of laughter, let’s laugh at what scares us. Since I have shared some statements said out of love to me over the last 20 years of coping with scleroderma and sarcoidosis, see if you can make me laugh with a well intended statement. Have some fun and make one up that would just to make yourself laugh Something like, “I thought I was ugly. Then, I thought of your face and realized I was not so ugly after all.” It’s almost like a hug, isn’t it? But one thing we all gain from the awful things life can deal us is a demented sense of humor. It’s okay. Laugh at what scares you.
It’s not always easy, but it can help if you find a way. Laughing at what scares us only makes us stronger. I don’t have the science to back up that statement handy, but I am sure some exists. I am just sharing what works for me. I also have faith. I have faith in those I love, those who love me and faith that someday there will be calorie free cake pops and cupcakes, with sprinkles. After all, it could be worse. I could be on fire.
For more information about supportive sites, check out Inspire.com. There are online discussion groups for patients, caregivers, friend and family. I have met some amazing fellow patients, parents of patients, spouses and friends. We may be spread out geographically, but the inspire community makes the world feel smaller and not so lonely when we have things going on few people near us have. And of course, I also recommend my Facebook page. We may have different diagnoses, but we all share our humanity and we have much to learn from one another.
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