It’s hard to know what to say when someone tells you they are sick and not going to get better anytime soon. It’s hard to know what to do when that person is in a lot of pain day after day. This challenge leads to lots of hurtful comments, and in those moments, it’s really hard to be the person with the chronic illness.
I believe a lot of the inappropriate comments people make towards those with invisible, chronic illnesses are a result of not knowing what to say or how to help. People want to fix the situation, but many times the resulting statements invalidate illnesses. As I believe these statements come from good intentions, I worked with the chronic illness community to understand the most hurtful comments they receive. Hopefully, this will bring attention to words you may not realize are hurtful. I also gathered helpful comments the community would love to hear. This way, everyone can communicate in line with their supportive intentions.
HURTFUL COMMENTS
- Yeah, I’m tired too.
- When someone with chronic illness speaks about fatigue, it is not the same thing as being tired. A healthy person is tired when they are working hard, not getting enough sleep, or are super busy. Chronic illness fatigue is not cured by sleep, occurs even if they have been resting all week, and feels like a brick is tied to every cell.
- You look so good, so you must be feeling better!
- It is very hard to live with an invisible illness because comments like these are made often. We look like the picture of health, but are crumbling on the inside. If we look good, it does not mean we feel good, and we probably don’t. This statement becomes invalidating to how we are feeling and often leads to others glossing over our pain.
- You need to stop being so lazy. You will feel better.
- Trust me when I say, if we didn’t have to sleep for a majority of the day and spend weeks in bed, we wouldn’t. Those with chronic illness have goals and futures they are hoping to make realities, and the rest required to function at the most basic level hinders their ability to do that. We don’t want to be in bed either, and pushing ourselves usually lands us in bed for longer as a result.
- You are faking it./You are trying to get attention./It is all in your head.
- No one would take 60 pills a day, drill a hole into their heart, put their lives on hold for decades if the pain was not real. We get comments like this from disapproving doctors, and receiving them from friends and family alienates us from our communities.
- You must not be trying hard enough! Have you tried exercise?
- Chronic illness patients spend their limited energy researching cures and driving between pharmacies, new doctors, and treatment centers. Whatever you believe will help them, they have already heard of or tried themselves. Exercise, yoga, and meditation are excellent supplemental treatments and many of us use them on a daily basis. However, our illnesses are so complex these exercises will not cure them. This statement comes across as not trusting the medical advice for which we have searched long and hard.
- You were feeling fine a few hours ago!
- One of the most frustrating parts of chronic illness is the fluctuation of symptoms. Feeling well one minute or one day does not mean we are cured and can resume a full and active life. Sometimes, we even get tripped up by this trap, and we do way too much. This usually leads to a relapse and flare of symptoms, which puts us in worse shape than before. Allow someone to tell you how they are feeling in the moment. Be respectful when someone needs to take a break.
- You’re too young for all of these problems.
- I think everyone with chronic illness wishes there was an age limit. A height bar similar to amusement parks. It would save a lot of childhoods because it is really difficult to be young and sick. Other kids do not understand and we end up spending more time in the doctor’s offices than on the playground. It forces us to grow up too fast. Making this comment negates that pain.
- You don’t look sick.
- Try to think of a response to this statement. The only thing that comes to my mind is, “but I am.” You may think this is a compliment, but when someone standing in front of you feels like they are being stabbed on the inside, it is hurtful and dismissive.
HURTFUL COMMENTS ON WEIGHT
I want to make a separate section with hurtful/inappropriate comments about weight. This was the topic for which I received the most response, and it really troubled me. Weight is a sensitive topic, and it is commented on too frequently in our society. Worth is not defined by weight. Those with chronic illness are generally not in control of their weights due to medication side effects and the specific diets they must follow. Since my most recent flare, starting in 2017, my weight has fluctuated by 30 lbs, and I am not ashamed of it. My body works extremely hard to fight off parasites and Lyme bacteria. It is alright if my weight needs to go up and down to do that. You never know the battle someone is fighting under the surface, so watch your words in regards to weight because they can be incredibly damaging. All of the comments below are inappropriate and hurtful to those with chronic illness and those in general.
- At least you look good, I wish I could be that skinny.
- Commenting on required diets: “Do you just eat grass?”
- Your face seems a lot fuller.
- Eat a burger, you need to gain some weight.
- Wow, you look different!
- You’ve lost weight, you look great!
Helpful Comments!
Having chronic illness constantly makes us feel like we are not enough, as our lives are an endless journey to “fix” ourselves. It’s exhausting. Below is a list of comments that will help those struggling feel supported and accepted. Keep these in mind when speaking to those with chronic illness.
- Is there anything I can do to support you?
- What helps you feel better?
- I can’t imagine my body feeling like that!
- I am so glad you asked for help.
- You are not a burden. You still have value.
- I know you are doing your best, and that is enough.
- What do you need from me as a friend right now?
- I’ve never heard of that, but I’ll do some research.
- I’ve noticed you’ve been quite/sleeping a lot/distant, how can I help?
- That sounds really challenging.
Thank you for taking the time to better understand those with chronic illness. There are significantly more of us than you think, and the numbers will continue to rise. I hope reading gave you more opportunities to align your words with your intentions. Please share this with friends and family, so we can create more understanding communities!
Sign up to learn more about chronic illness and how to support those in your life!
Maddy Meets Lyme 