Please Don't Say These Things to Someone Dealing With a Disease


It seems another post about what not to say to people with illness is needed because another week has passed, and I am still receiving messages and comments filled with unrealistic suggestions and incorrect statements about how to deal with my issues. From strangers, mainly, no less.

Since I have been dealing with two recent diagnoses, I have shared a lot of information about myself, our infertility and, my Crohn’s disease.

I have also shared what not to say to people struggling with similar conditions, and yet, some people still go out of their way to offer up suggestions for me to “try,” opinions on what I am doing wrong and “solutions.”

So, another post about communication etiquette, from my point of view, is warranted.

1. “You need to relax.”

This comment makes me beyond livid every time I read or hear it.

Not once have I ever went into the doctor’s office and they suggested I relax to heal my problems. Not once have I been told relaxing helps those who have been medically diagnosed my conditions. If it were that simple, there wouldn’t be doctors still searching for a cure for Crohn’s disease. I’m sure my doctors would avoid all this medication and repeat scoping if this were the case. No, relaxing is not going to work. And telling me to “calm down” is the best way to ensure I don’t calm down.

2. “Everything happens for a reason. It’s all in God’s plan. Have faith and it will all work out.”

Telling me everything happens for a reason gives me the impression you blame me and my choices or that you feel I did this myself. It makes me think you believe I deserve what’s happening to my body. It gives me the impression it’s just meant to be or that if I wasn’t such a “sinner,” I wouldn’t be sick at all. (I’ve actually been told this.)

Maybe you can tell me the reason my body hurts on the inside or why my skin breaks out and why I feel nauseated all the time? Or maybe you can tell me the “higher reason” why food, my favorite thing, seems to be my nemesis? While I appreciate your prayers for me, please don’t ask me to “find God for healing.”

3. It happened to my stepfather’s brother’s wife, so I understand.

Unless you have spent time actually researching my specific issues for yourself, you really have no idea what is happening inside my body — only an idea to compare it to. Just because your stepfather’s brother’s wife had Crohn’s disease or a cousin of yours was infertile does not mean you know what’s happening in my body. You’ll never fully understand unless you experience issues of your own. This is why I share my story — so others can understand my version.

I do understand you may be “just trying to help,” but if you take the time do the research, even just a little, you will see that every single person with Crohn’s disease has different symptoms. No two people will experience the same symptoms, the same flare-ups or the same medical treatment. That’s why it’s so hard to diagnose.

4. “Have you tried this? Could it be this/that?”

Just because one person has symptoms related to gluten or spicy food doesn’t mean another will too. This means the treatments that have helped your family members may not necessarily help me. Finding the right care for yourself takes time, doctors’ opinions and a lot of medication testing.

While I appreciate the offering of new information, this isn’t a new illness for me. As someone who has been dealing with Crohn’s and infertility for years now, if there’s an article, website or any other information available about the cause, you best believe I have seen it, screenshot it, sent it or saved it. I want to know it all.

When doctors give me any information about a new diagnosis, I make sure I WebMD the hell out of it. I spend the next week researching any details I can, looking into any symptoms, tests or details available. I like to go back to the doctor with more knowledge about the process than they have.

Although some of these messages with “try this” or “try that” may be genuine and truly offered with sincerity, I thank you, but I am good. I am owning my Crohn’s disease and infertility. I have done the research on my issues, and any questions I have will be discussed at my next doctor visit.

5. “It’s no big deal.”

This one hurt’s the most — to know your issues are not high priority. When you tell me my issues are “no big deal,” what you’re really saying is they are no big deal… to you. Coming to that realization, that your issues don’t matter, it hits you like a brick wall.

When you tell me my problems are “no big deal,” what you are really saying is I am unimportant. You are really saying my feelings are invalid and my emotional and physical well-being should be overlooked. You are saying you cannot be bothered to care about what happens to me or my body. What you are really telling me is you don’t care. Period.

When someone you know is diagnosed with an issue or disease, you do not tell them “it’s no big deal.” Instead, you offer up your support, kindness and hope. Whether it be family, a friend, a coworker, you always give your undivided attention to that person because their issues are important, life-changing and most certainly, a big deal.

When you tell me “it’s no big deal,” you are showing your true feelings – that I don’t matter. When you tell me to calm down, you are minimizing my problems and taking away the reality of just how negative my situation is.

I have two diagnosed issues to dwell on daily, and I feel I have every right to be upset. I can be angry because they are a big deal to me. They are a big deal to my family and my future. These are issues I am going to have to live with for the rest of my life. I have every right to be angry, I have every right to worry about what’s next, and I have every right to dwell on my symptoms. Why? Because they affect every aspect of my everyday life.

Seriously.

But I do thank you all for taking the time to read my journey and for trying to help. I feel like I have to specify the kind words and gestures given to me are extremely valuable and meaningful. And this post is not meant to curb your interactions with me, only to help you avoid making an offensive comment, and to help you understand how I may interpret your words.

I cannot thank you enough for taking the time to read and comment on my posts, and I thank you for letting me in on your lives.

A longer version of this post first appeared on MaryMHorsley.com.

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