6 Things People Have Said To Me About My Chronic Illnesses (And What I Wish They Would’ve Said)

chronic illnesses

Original Image Credit: Jean Gerber

This isn’t a topic that I like to stop and think about often. But when I do, it usually spurs a blog post like this. Nobody likes to talk about the painful or frustrating things that they’ve been told by someone who likely had no idea what they’re going through at the time. Or maybe they did know, but they didn’t know how to say what they were feeling or thinking. My take on this topic is that the only way people will become more aware of how damaging their words can be is by talking about it.

With that said, here’s my take on things that have been said to me about my chronic illnesses and what I wish they would’ve said instead.

Hannah Wei

Image Credit: Hannah Wei

  1. “I know exactly how you feel.”

It is impossible to know exactly how I feel about my chronic illnesses. If you’ve had similar experiences, you can certainly empathize with me. You can, to an extent, imagine what it feels like to be me. But you can never really know for sure what it’s like to be in my shoes and face the issues that I’m dealing with.

Making the assumption that you do may look like a kind gesture on the surface. Unfortunately, it can be just as harmful as any ill-intentioned comment. It can water down the authenticity of my experiences. It can unknowingly encourage me to play the comparison game. In that simple sentence, I hear: Look, I feel just like you. I didn’t have to quit work. I’m not as sick as you. I’m not as poor as you. What is wrong with you?

What I wish they would’ve said:

That you can imagine how I feel. By doing so, you’re not presuming to know how I feel. Instead, you’re displaying empathy while also leaving the door open for further discussion.

Image Credit: Alexander Lam

Image Credit: Alexander Lam

2. “My aunt has that form of arthritis. She used ___________ to get it under control. Her arthritis doesn’t seem to bother her anymore. Maybe you should try that.”

Although this comment appears innocuous due to the seemingly helpful nature of it, it’s actually not. It’s generally not helpful to assume that you know what’s best for my health when I’ve spent hours, weeks, and months researching my own solutions. It can feel like being slapped in the face, or talked down to like I haven’t put forth the effort to heal myself and my body.

Luckily, I’m not usually a person who takes advice from anybody but myself and my doctors. But if I wasn’t as obstinate as I am, it would generally not be safe to tell me what I should be doing with my body and/or health. What helped one person could end up being harmful to me for a variety of reasons. It’s best to leave medical advice to my doctors.

What I wish they would’ve said:

That you support me as I make these decisions about my chronic illnesses. That you’re proud of how I’ve educated myself about these conditions.

Image Credit: Christian Hebell

Image Credit: Christian Hebell

3. “Natural cures usually work for that disease.”

This statement can be frustrating to hear. I’m generally pretty open to trying new things to help manage my diseases. One benefit of consistently blogging about my chronic illnesses is that I’ve had the opportunity to try new things that I wouldn’t have otherwise been able to try. However, I like to try these things at my own pace, after I’ve thoroughly researched the possible pros and cons.

There are some things (such as extensive vitamin or supplement regimes) that I absolutely cannot try because of the medications I take or because of prior health conditions. I’ve had friends suggest these regimes, even though I cannot use them and they carry very serious consequences for my health.

What I wish they would’ve said instead:

That you support the decisions I’ve made about my chronic illnesses. Or simply not commented on it at all. While support is greatly appreciated in a friendship, it’s not necessary if they just wanted to have a conversation with me.

Jean Gerber

Image Credit: Jean Gerber

4. “Have they figured out what’s wrong with you yet?”

There’re a couple of problems with this question. The most obvious being that it makes the assumption that I even want to talk about my chronic illnesses. I’ve been at various stages of grieving regarding my health conditions for the past two years. At one point, I would feel okay about my health but not be ready to talk about it with anyone except a close family member. Other times, I was ready to talk about it but I hadn’t fully accepted that illness had become a part of my daily life. For most of that time, my doctors had a limited idea of what was going on with my body. That makes answering this question impossible.

The phrasing also sends the message that the illness is my fault. Even though the person asking the question likely doesn’t mean to make me feel bad about myself or my chronic illnesses, it can have that effect.

What I wish they would’ve said instead:

Asked me how I felt about my diagnoses. This open-ended and focuses on me and not my illnesses. Ask me what my doctors seem to think might be going on. Either of these questions leaves me plenty of room to back out of the conversation if I decide that I don’t watch to talk about it. They’re also nonjudgmental and avoid placing blame on me for my illnesses.

Image Credit: Yuriy Khimanin

Image Credit: Yuriy Khimanin

5. “At least you don’t have cancer.”

The biggest issue that I take with this statement is that it’s a guilt trip. I already feel guilty about not working, not using the education that I received, not being able to contribute to society (a notion that is probably overblown in our society, but nonetheless influences how I feel about myself and my self-worth) and a million other things that are different because of my diseases. Saying something like, “At least you don’t have cancer,” just adds to those feelings of guilt, on top of making me feel like I have no reason to feel bad. It’s like telling me that I don’t get to feel bad because I’m not “sick enough.”

What I wish they would’ve done instead:

Offer general support. Or changed the topic entirely. I think people forget that sick people are just like regular people: we have hobbies, goals, and interests. There’s plenty to talk about besides my chronic illnesses.

Image Credit: Kendall Lane

Image Credit: Kendall Lane

6. “That’s really sad/terrible/shameful that you didn’t get to do _________.”

I used to be able to shrug this statement off. It’s difficult to hear when I’m not feeling well, though. I’m usually already counting on both hands how many things I’ve delayed or given up because it just wasn’t possible to do them. I already know how much it sucks to not be able to do that (whatever that may be). Sometimes it can seem like the person saying that is ashamed of me, even though I know they’re probably not. They’re just echoing what they’re thinking, which, unfortunately, in this case, echoes what I’m feeling. That can be frustrating when I’m already dealing with physical pain and fighting my own temptation to feel bad about myself and my limitations.

What I wish they would’ve said:

Tell me that there’s plenty of time to do that thing, whatever it may be. Remind me of my number one priority right now, which is to take care of myself and feel better.

– Hannah @ Knittering In Appalachia

DISCLAIMER: All opinions expressed in this post are personal opinions and views only. They are not intended to take the place of medical advice. If you have any questions regarding whether or not it is safe for you to use a product that I review on my blog or implement a new routine, please seek the advice of a medical doctor. 

One thought on “6 Things People Have Said To Me About My Chronic Illnesses (And What I Wish They Would’ve Said)

  1. thelifeyougaveme says:

    this is so true!as a general rule, people who know others with chronic illness are best to never offer opinions, rather support and encouragement and a listening ear. its up to our doctors to make the suggestions. they know what they’re doing(some of the time)so leave it up to the.
    more things i have been told:
    “you don’t look sick”
    “but you used to be able to do everything.”
    “everyone doesn’t feel well sometimes. don’t be so dramatic.”

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