Anyone that has ever struggled with any type of a chronic illness has had some hurtful comments made to them at one time or another. The sad thing is, more times than not these hurtful comments don’t come from hateful, rude people, but more often than not, well meaning (although completely ignorant) people, who are trying to be “helpful.” Now before you go getting offended at me calling lots of nice people ignorant and putting “helpful” in quotation marks, hear me out. First, to those of you who are sick, when someone does or says something that proves they have no idea what it is like to live with a chronic illness, GUESS WHAT? It’s because THEY HAVE NO IDEA WHAT IT’S LIKE to live with a chronic illness! And I am so thankful that most of the world does not understand what it is like to deal with long term illnesses, because that means they are relatively healthy! Yes, everyone needs to grow, and learn, and be sympathetic, but if you are wanting true empathy and understanding from someone who has never been through the day in day out struggles we deal with…. well, you might as well try to milk a frog. I know it’s so easy to wish everyone would just understand and “get it”, but we forget that to have our wish all the people we love would have to go through the same hell as we are living in, and I don’t think any of us would wish that on our worst enemy. I just wanted to put out that reminder for all of us. Cause it is lonely, and hard being sick all the time, and people don’t understand. But I’m so glad most people don’t. It makes me so sad that some of my dear friends do get it all too well, because I know the horror they had to go through to understand and be empathetic. But that being said, to those of you who are blessed enough to not be able to understand the struggles of dealing with chronic illness, please keep reading, cause I am not going to let you off the hook just because you haven’t had to live through it.
Of all of the startling, hurtful, sad, or unintentionally insensitive things people have said to me, the one I am going to talk about today is probably one of the hardest for me to handle. And I want to talk about it today for two reasons, both for those who don’t know what it is like to be ill, so you can perhaps consider what you say a little more, and also for those of you that are ill yourselves to remind you that you are not alone, or wrong about sometimes feeling sad or hurt by a well meaning comment from a friend or relative.
First, a little hard truth about myself. I have struggled with chronic illness almost my whole life. Sometimes worse, sometimes better, but I can’t remember a time where I felt good. And the truth is, I wake up dreading every day. I have for several years now. I feel the best I will feel the whole day late at night, (which still isn’t very good) but wake up every morning with moderate to severe nausea and pain. And that constant dread of going to bed knowing you have to wake up feeling rotten the next day takes it’s tole. It’s been years since I didn’t wake up and the first thought that enters my head in the morning is “crap…. another day.” Now you can judge me for that. You can point out how I could have it worse, and many people do have it much worse. You can point out how I should be grateful to be alive, and that some people didn’t wake up at all, and that life is a treasure. And would you be wrong to tell me that? No. And Yes. The thing that probably stings the most is when people point out to me all the things in my life that I should be thankful for. They point out what a darling of a son I have, what an amazing cute store I have, the sweetheart and rock of a man that I have as a husband, and all the good things I have to “live for.” Are they wrong? Nope! In fact, they couldn’t be more right! I LOVE my life! Seriously! The ONLY thing I want to change about my life is my health. I love my marriage, my son, my friends, my community, my business, ALL OF IT! But the thing that is hurtful is how if I mention any type of sadness, or depression, exhaustion, or dread of each new day, all of the “good things” in my life get offered up to me on a platter, as if that somehow should make me wake up feeling excited about each day. And that’s just not the truth. Let me give you an example: Let’s say you have a life you love, great plans, wonderful family…. all of it. And you wake up with the stomach flu. Are you suddenly NOT grateful for your life? NO! Do you need to be reminded what a blessed person you are and how you could have it worse? NO! Do you need to “focus more on the positive instead of the negative?” NO! You are puking your guts out and that consumes your entire day. You don’t love your husband any less, your life any less. You aren’t any less grateful for all the amazing people, or opportunities you have. You are just SICK. And you are just surviving. Now imagine that every day for the past 3 years you have woken up with the stomach flu. Some days you can hide it a little better, some days you can’t hide anything. Some days are a little better, but you go to bed every night knowing you have a 90% chance of having the stomach flu the next day. Now, suddenly because this is prolonged, do you need to be reminded how blessed you are? Exhorted not to “give up the faith,” “don’t give up on God!” “Don’t forget all the people who love you!” “Don’t forget you aren’t alone!” “Remember all the blessings you have!” WHAT???? No REALLY….WHAAAAATTTT?
Most people would NEVER dream of going to someone who has the stomach flu and reminding them of their “blessings,” but somehow in life once the illness goes past a few weeks people suddenly think that you must not be remembering the good things about your life, or you must just be “focusing on the negative” and that’s why you are feeling depressed. Ok, hold up for just one minute…. Can you for one second imagine what you would feel like if you had the stomach flu for two or three years straight. You were always either in the throws of the horror, or trying to recover from it only to be hit with it again. Can you just think about the tole that would have on your psyche? And then can you imagine how it would be to constantly have people trying to point out the “good things” to you, as if that would magically make you stop puking? I know those of you who struggle with chronic illness CAN in fact imagine it. And those of you that don’t…. please just take a moment to stop and imagine. For the sake of all the people in your life who struggle daily, just stop and put yourself in their shoes. Please… And I want to assure you as someone who is incredibly blessed and also incredibly ill, there isn’t a day that goes by where I am not so thankful for my amazing husband, son, and life. Me waking up and thinking “crap another day” and being thankful for all the wonderful things in my life are two completely separate issues. One does not exclude the other.
And I know I’m being a bit harsh, but I’m sorry, it’s time. I’ve watched too many of the people I love be hurt by others who somehow don’t have the time or compassion to put themselves into your shoes, but miraculously feel the need to give you advice, and tell you to “keep your chin up.” And this works just as much for spouses and family of the chronically ill as it does for the ill ones themselves. My husband struggles with sadness, despair, and loneliness. And often gets judged and offered meaningless platitudes as well. You don’t need someone to tell you not to “give up on God,” or “don’t let this get you down!” You need someone to sit and cry with you. To shake their head and say they can’t imagine. To tell you that you ARE strong. And you ARE amazing. And to just listen. To just hug you and tell you IT SUCKS. For those of you who have never been though something so awful it threatened to rip your life apart, you may think that a response like that will just “feed the despair”, but it doesn’t. It makes us feel less alone. You may think you need to bring some “positive” into a suffering person’s life. But in reality, an acknowledgment of the hardness is far more meaningful. Just feeling that someone else noticed how many hard knocks you are taking, and cares… THAT is helpful. We don’t need answers. There ARE NONE. Again I repeat THERE ARE NO ANSWERS. No Bible verse, no inspirational quotes. An answer is a solution to a problem, not simply something we put at the end of an equation to make it look complete. So unless your “answer” for someone’s problem actually solves it, it is NOT in fact an answer. And if your mind wants to argue with me on that, and you want to justify your ill timed advice with “God’s word has all the answers we could ever need!” Then just picture yourself hanging over the toilet with that horrible gut heaving vomit, and having someone lean over and tell you “All things work together for good…. don’t forget that!” or “Remember all the blessings you have!” Or “In everything give thanks.” Would that be helpful to you? Would this benefit you as you were puking your guts out with the flu? Would it inspire you? Would it “build you up?” NOPE! Some things just have to be endured. Some days just have to be survived. Does it make the verse you are quoting less true just because it is said at the wrong time? No, but it does make it WRONG for you to say. Yes, I said WRONG. A verse that so many of us seem to forget is “there is a time and a place for everything under the sun.” If you try to plant when it is harvest time, there is no benefit, in fact it is wasteful and hurtful. If you try to laugh when it is time to mourn, you will get punched in the face. If you try to build when you should be tearing down, you look like a fool. All of these things are right when the timing is right, and wrong when it is not. So if you want a Bible verse to tuck into your hat, to help your “bring God into these dark situations” bring this one: Ecclesiastes 3:1, there is a time for everything under the heavens. And there is a time for advice, but if you are dealing with someone who is chronically ill, this is NOT the time. This is the time for love, and understanding, and help, and compassion. “Well isn’t it comforting that God won’t give you more than you can handle?” First off, that’s a load of crap, and NOT found in the Bible. In fact Paul says the exact opposite when he says that he and his traveling companions had so much put on them that they despaired even of life itself. So what was Paul’s problem? Was he not focusing enough on his blessings? Was he not being thankful for his blessings because he wished he could die? No! Sometimes life just hits you hard. We live in a world full of pain. And no matter how spiritual, or thankful, or trusting, or positive, or “faithful” we are, guess what? We still live in a world full of pain!
And whether you are religious or not, this concept still applies. Trying to bring a “positive spin” to everything rather than caring enough to just grieve with those who are suffering and show true compassion is never helpful, never uplifting, and is like a neon flashing sign that tells them you don’t mean enough to them to actually learn how to care. Yes, people need to learn how to care. And like I said at the beginning, I know many people that do this are well meaning, and are trying to help. But please, if you truly want to help, take the time to grieve with someone who is suffering rather than offering a platitude, saying or Bible verse that minimizes their pain by implying what they are going through is small enough that some catch phrase should be able to fix it. Remember, if you wouldn’t appreciate hearing whatever you are about to say as you were hanging over the toilet with the stomach flu… then don’t say it to someone who is chronically ill. Compassion, though simple, is always the most help. Taking a moment to ponder what your life would be like if you were in their shoes, and expressing to them how much it would alter everything you know and think about life is comforting. And acknowledging to them that you understand nothing you could say could ever make it better. Although it may seem like you are doing nothing, it could be the the “nothing” that changes someone’s life for the better.