10 Things Not To Say to Someone With an Invisible Illness

I will be sharing a post soon on the upside of this kind of stuff soon…the positive spin, the “how to help” and happy-go-lucky kind of stuff. Yes…something more along the lines of what we can say that helps those who struggle with invisible illnesses.

But so very often, I think what helps us get into the mindset of what we can do that is positive, is to start with what not to do. Sad, but true.

We all make mistakes…I know I do. We learn from experience. So often, we learn best when we, ourselves, see things from a first hand perspective. This is where I come in on this topic.

We all struggle to know what the right thing is and what to stay away from when we are living with someone who struggles with something we cannot even see with the naked eye, let alone…fully understand. This holds true for grief, internal battles we cannot see (that we all go through) and as I am discussing today, the invisible illnesses people suffer with, like my own Fibromyalgia and Chronic Fatigue.

Now that I have been living with an illness that is not outwardly visible in many ways, (but oh-so-very-REAL), I have seen first hand an entirely different layer of what so many in our world deal with ~ and they often feel alone.

Here are a few things I have learned that folks like myself don’t want to hear when struggling with an illness or battle that is unseen. These things do not help in most cases.

As with anything, you have to take it all within the context of the conversation – of course. But in most cases, I can say that when I hear such things as the list below, it not only doesn’t help me, but I walk away with more than just the battle I am already fighting due to my illness to contend with.

And I must say ~ This battle is enough.

“Well, at least you don’t have ___________” (insert something “real” here). This happens all the time, friends. We already know that we need to focus on what we are grateful for in the midst of the battle (WAR) we are fighting. We already know that we are more fortunate than many others and we still have much to be thankful for. We already know that this probably won’t kill us. But none of that makes it any less real to contend with. WE can say this, but when others say it TO us, it makes us feel small, diminished, and “less than.” The world has decided what it calls a “serious” illness and chalks the rest up to mere annoyances. The world screams this to the person living with the chronic and invisible illness. We don’t need our near and dear ones to do it too.

“Maybe you just need to exercise, eat differently, drink more juice, take better care of yourself, etc. Although this may hold true for many who have a chronic illness, doesn’t it also ring true for the majority of the people in the world? I can speak for myself that this girl was IN SHAPE prior to being struck down with Fibromyalgia! I was not lazy by any means when it came to exercise or even the way that I ate and took care of my physical health. And it still happened. This is a very sensitive area. Most folks who struggle with a chronic illness, especially one that not even the doctors fully understand are on a roller coaster constantly. They are trying every vitamin, every eating plan, every form of exercise, rest, sleeping techniques and helps known to man and under the sun. To imply that they could do better when they are struggling to fight their illness AND implement a multitude of coping skills, just adds to the defeat and exhaustion they probably already feel.

“You might want to go see a counselor.” First of all, your friend has probably already been down this road. Think back for a moment. Look at things like autism, ADHD, Bipolar Disorder. A couple of decades ago, these were invisible and non-measurable “illnesses” as well. The world didn’t accept that there was a physiological link in the mix. The world wasn’t even sure these things were real and not all in their heads. But now – today, we accept these things as very, very real. Fibromyalgia (my thing), Chronic Fatigue Syndrome, Adrenal Fatigue, and other illnesses like these are still being viewed that way. The world  hasn’t caught up to us yet. And we know this. Most of us understand this and employ grace towards the rest of the world who doesn’t get it yet. We know that the world hasn’t figured out whether or not to believe it’s a real thing. But we want you to trust us that It is not all in our heads. A counselor may help, but exercise caution if you are going to suggest this to a loved one – the context needs to fit, as always.

“This too, shall pass.” I’m sorry, but give me a break. Most of us are struggling to surrender and accept, friends. The line between accepting our illness and full-blown resignation is very thin. To hear that it may magically disappear one day does few of us any good. What we need is to believe we can live with it better, not wish for or hope for some magic wand to be waved and take it all away. Sorry, but I am a realist. I am also a Christian and believe that God can heal us. That is part of my reality as a follower after Christ. But I look at the reality of many who suffered in the Bible and not a whole lot of it was “removed” from them while they walked this earth. Yes… most of us just want to learn how to cope as best we can if for some (crazy) reason, this never does pass. Do we promise a cancer patient that it will pass and go away some day? I hope not. The way we BEAT THIS THING is not to live every moment hoping that it will disappear, but find ways to live for Christ in the midst of it.

“Do you take vitamins and supplements?” “Yes…let me go grab my suitcase and show you. Want some? I have plenty and am willing to share.” ‘Nuff said.

“You “should” _____________” If you suffer from a chronic, and invisible illness and have been around the block a time or two, please take this one off your list. You can say this all you want. But if not, then there is no place for “shoulds” in our vocabulary when we are talking with someone about their illness battles. Again, it implies they have not done enough. It implies that we assume they haven’t already been there, done that. And they probably have. I’ll be the first to say that there may be some things I haven’t tried in order to cope with this thing, but chances are, I have tried most things on the “should” list. Multiple times.

“Well, you seemed fine yesterday ~ what happened?” These things, dear friends – these crazy problems that come with these invisible illnesses or battles that we fight – well, they have a mind of their own sometimes. I can say without question, that I, for one, have serious control issues. I am one motivated individual when it comes to employing every coping (control) skill in my magic Mary Poppins-like bag when it comes to avoiding pain and suffering. And if I could wake up today and use all of my tricks and tools so I feel as good as I did yesterday, I would do it. No contest. (yesterday…all my troubles seem so far away…sing it with me!)

“So much is about attitude. Mind over matter, baby.” Yes. And my attitude just got flushed down the toilet right after you said that to me. Hee Hee.

“You just need to give it over to God.”  For the Christian suffering with one of these monster illnesses, this is one of the worst thing another Christian can say to us as a blanket statement. Again, if shared in the right heart and within the right context, it is more than okay, but so often, we hear this just the way I have written it above. Saying it this way and without framing it appropriately implies that we aren’t…that we haven’t been on our knees beseeching the Lord to teach us and refine us through this thing. It insinuates that we are suffering because we have failed to let God be God in some way. It may be true that we need to surrender and learn from God through our suffering ~ isn’t it true for us all? But to imply that in some way we are sick because of our lack of surrender is just…well, kind of sick in its own way, don’t ya think?

“You just have to persevere.” Yup. Gotta run the race and run it well. Also, need to surrender at the same time. I have to tell, you friends. Sometimes, we want to give up. Some days we need to give up. We probably won’t stay there. But we need a break today. Don’t you have days like that even without being assailed by an invisible illness? Part of the way that we run our race when we are dealing with the invisible realities (battles) in life is to step out to the sidelines and stop for a minute. Pep talks like this don’t help us. Hopping on Jesus’ back instead is what we really need to do sometimes.

So…there we go. Let me conclude by saying that all of the above apply to me. I am not only the receiver of such comments but the giver of them as well. I am not the only person suffering with something hard and invisible today. This list applies to me with my invisible illness as to things I don’t really appreciate hearing. It also applies to me when it comes to things I should keep in mind when I am talking with someone else who is suffering in some way. We can learn from one another how to better build one another up, encourage, specifically pray, and just truly be there.

In the next post, I will share, from my own perspective, what we CAN do that helps those who struggle with these invisible battles.

Because isn’t that what it’s all about? One of the most loving things we can do for one another is to share with them how to help.

Maybe they, in turn, will do the same for us some day.

Therefore encourage one another and build one another up, just as you are doing. 1 Thessalonians 5:11

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