Things You Should NOT Say To Someone With MCTD
A major component that adds to the negative overall experience of life with mixed connective tissue disease is that most people have absolutely no idea what MCTD is. If you don't know what it is, how it works, what can happen etc. then you leave the door wide open for saying something that you probably shouldn't. Inside the community of people with MCTD and autoimmune disease there is the consensus that we tend to hear certain remarks often that come across as insensitive...or even downright rude. So in an effort to help you keep your feet out of your mouth, and to help me vent off some frustration, here is a list of things that you should never say to someone who has MCTD.
At Least You Don't Have Cancer!
"At least you don't have cancer" is one of the absolute worst things that you can say to someone who has mixed connective tissue disease. Why is it better that I don't have cancer? Is it better because sometimes you can cure cancer, but I have no chance of being cured? Is that why? Or is it because it is better to have a disease that nobody knows or understands so people are constantly devaluing how incredibly difficult life is with MCTD?
Maybe you meant that it is better than having cancer because, for many of us, we look normal and healthy. I mean sure, on the inside we are weak and frail and dying, but on the outside everything looks hunky-dory. When you say something like "at least it isn't cancer" what you are doing is minimizing our struggle and accentuating your ignorance of the literal bane of our existence. Bravo, that is a lot of foot-in-mouth for only six words.
Get The Name Right
I get it...mixed connective tissue disease is four words that you are not used to seeing together. I do not expect you to memorize the MCTD acronym the first time you hear about my disease. However, if you are close friends or family, it would be really respectful of you to take the time to learn the name of the disease. It helps to give us the feeling like you give enough of a rats-ass to bother getting the name right. Never mind actually learning about what day to day life is like living with MCTD.
There is no faster way to show a person that you do not care than getting the name of their disease wrong even after you have had plenty of opportunity to look it up. People with MCTD tend to feel a little isolated in general and it only serves to perpetuate this feeling by not even caring enough to learn the name of the thing that is ruining our lives.
You Look Healthy
Bitch, if I had the strength in my hands I would choke the shi...sorry. Ahem. I mean, please, please do not tell someone with MCTD that they "look healthy" as this implies that just maybe this is all in our heads or we are making this up. One does not need to look sick in order to be sick. You would know this if you were a doctor, which you are not, or you would not be saying such asinine things to someone with an incurable and debilitating disease.
When you make the statement that "you look healthy" this comes across as saying "are you sure you are really sick, because I am not convinced". Why do you need to be visually satisfied with our illness for it to count? This is an extremely small minded point of view and, honestly, you should be ashamed of yourself for letting such an insensitive thing escape your mouth. I look healthy like you look smart, apparently.
I Wish I Had The Time To Nap
Who would say such an insensitive thing to someone with a chronic and incurable disease that steals your energy and zest for life (and a million other things you don't miss until they are gone)? Astoundingly it is not uncommon at all for people to make comments about sleeping too much, or sleeping during the day, like we have a choice in the matter. As it turns out it takes a lot of energy for my body to attack itself from the inside out and sometimes I get downright tuckered out.
I wish I had time to nap also. I mean, I could not take a nap and end up passing out while standing in line at the grocery store. Or maybe I will just tax my system too greatly by not sleeping when my body tells me to. This can result in a full blown flare up of my immune system and potentially dangerous activity levels of my immune system dysfunction. Saying that you wish you had time to take naps is the figurative equivalent to going into a pediatric oncology hospital ward and ringing a cowbell at 5:00 A.M. to get all those lazy kids with cancer up and out of bed like they should be.
You Should Try Exercising
Yes it is true that pretty much all living people could benefit from regular exercise. However, it is also true that mixed connective tissue disease can not be cured by exercising any more than you can cure a malignant brain tumor by doing sit-ups. Suggesting that someone with MCTD should exercise so they feel better is a thinly veiled insult disguised as helpful advice. Do you think that you are offering unique, helpful or insightful advice we have not thought of yet?
With all of the doctors and specialists that people with immune system diseases see you can rest assured that someone has mentioned to us already to try to lead an active lifestyle to whatever extent our disease allows. If you have an autoimmune disease it is not healthy or advisable, at all, to push yourself to do things like exercise when our bodies tell us not to. This is not a matter of motivation, like it is with you, as though we could just decide to try harder and not be diseased any longer. Thanks for the tip, jackass.
You Just Gotta Suck It Up
"You just gotta suck it up" is just about the most insulting, most infuriating thing you can say to someone with MCTD. This is literally saying that you just need to stop complaining and suffer in silence. If I took a big hammer and broke all the bones in your legs, for example, no matter how much you "suck it up" you are going to have an awfully hard time running a marathon - you feel me? Do you understand how a positive mental attitude will not enable your broken legs to carry you forward?
A positive attitude is absolutely one of the most important things to have if you have a chronic illness or disease. Sometimes it will be the only positive thing that you have. But my struggle to remain positive in spite of overwhelming odds is just that - my struggle. If you tell someone with MCTD to suck it up then this shows you either are insensitive or uninformed...possibly both.
You Know What You Should Do...
"You know what you should do" are some of my least favorite words. Once you get sick everyone around you becomes a doctor and will provide you with free, unsolicited advice, about what you need to do to cure yourself. Before you say this to someone with an incurable disease perhaps you should take a deep breath, plug your nose and ears, and blow it out your ass. Both situations will result in the same sour look on my face.
Before you offer medical advice to a person with MCTD you should first ask yourself if you are an internal medicine doctor that specializes in immune system dysfunction, or not. If not, perhaps that is a conversation best left to the professionals. There is merit in offering helpful advice to someone who is searching for answers however there is a right way and a wrong way to accomplish this. If offering advice is your opening line perhaps you should revisit your approach.
I Wonder How You Got It?
You wonder how I got this incurable disease with no known cause, huh? You know what is crazy? I wonder that too! That is so insane that you wonder how I got sick just like I do. I would never ask, because that would be impolite, but would you mind winging out some left-field ideas as to why you think I got sick? That should be a lot of fun!
It might be a better idea to leave your wondering, and guesses about how someone came to have mixed connective tissue disease, to yourself. While it certainly warrants mentioning that you wonder how it happened, this is where the allowance ends. Please do not give us the benefit of your zero understanding or experience of our situation in the form of trying to solve the mystery of our disease without the benefit of knowledge or medical science. You would always be better off to just express your condolences if you must say something, and to let the person know that you care about them and their well being.
I dare ya. I double dare ya...
About the author - Steve Goodale is a blogger and technical specialist from Ontario Canada, winner of the 2018 Industry Leadership Award, who reaches over three million readers per year with his popular pool and spa blog. Steve started the www.CookForMeBaby.com blog about healthy eating after being diagnosed with a rare and incurable autoimmune disease. You can read more on his story about life with MCTD here. For more healthy cooking inspiration check out his other delicious recipes.