• Victoria Gasparini

10 Surprisingly Hurtful Comments You're Making to People With Autoimmune Disease


The past few years, as I have struggled with navigating my way through autoimmune thyroid disease, I have learned the power of empathy when speaking to others dealing with illness. Our words carry such strength, more than most of us realize. I am sharing this post today with the intention of spreading awareness of the power of words, and to show that sometimes even the most well-intended comments can be extremely hurtful and offensive to the people we love most. Below are 10 ‘surprisingly’ hurtful comments often made to people with autoimmune diseases.


1. “But you don’t look sick”


This one hurts more than you’d think. It may seem so innocent, but it makes us wonder whether you’re complimenting our ability to disguise how we really feel, or whether you’re questioning the validity of our condition altogether. This comment can feel like a punch in the gut to someone who is struggling with autoimmune disease.


2. “I feel like that too!”


Nope, no you don’t.


I am sure you are tired, I am sure you have bad days, and I am sure you have your fair share of pain, illness, and stress, but chronic fatigue and being tired because you stayed up too late, or had an early morning, are two completely different things. Chronic fatigue (resulting from autoimmune disease) is a debilitating and medically recognized condition whereby your body is unable to function due to extreme exhaustion, both mentally and physically. It is not the same as being tired. If this is your way of showing empathy, I promise you, it doesn’t feel that way.


3. “It could be worse”


Yep. You’re right, it could always be worse. This doesn’t take away from the fact that we are still suffering immensely from a condition that you have not taken the time to understand. It is hard enough for people with autoimmune disease, especially women, to be validated by the medical community so to compare what we are dealing with to other, perhaps more fatal conditions, is a detrimental thing to say to someone with an autoimmune condition.


4. “Have you tried doing this…”


Listen, I am the first to advocate for the power of food as medicine, natural approaches to treatment, integrative medicine, and alternative ways to treat autoimmunity. I am also immensely supportive of conventional treatments that I have seen save the lives of many people with autoimmune diseases like Lupus and Rheumatoid Arthritis. One method of treatment did not work for me, so I moved on to other forms and found the perfect, individual treatment for my disease. Not everyone with autoimmune disease is as lucky as I am. Unless you are a physician, or you were asked by someone with autoimmune disease for advice, please do not make suggestions or share your opinions on treatment methods. I can guarantee you, someone struggling to navigate autoimmunity who wants to improve their condition, has tried everything from intense drugs to chanting at the moon. This comment makes us feel like you don’t think we are trying hard enough, and that is hurtful.


5. “I know someone with that disease and they feel fine, so it can’t be that bad”


No two people will experience autoimmunity the same way. Just because your friend’s brother's wife’s mother has the same diagnosis, doesn’t mean we are anything alike. My greatest fear when I posted about putting my autoimmune disease into remission was that people would feel like a failure for not being able to do the same, or worse, I feared someone who knows me would tell a person with autoimmune disease that because I live 90% symptom free now, that they should too. There is no right way to feel when you are ill, so please stop saying this to your family or friends with autoimmune disease.


6. “You need to be more positive”


Again, I truly believe that a positive attitude is a powerful tool when it comes to healing. I believe that you do need to wake up in the morning and tell yourself that you’re going to get through this. I also believe that some days have to be spent drowning in your tears, feeling sorry for yourself because guess what? Life handed you a crummy hand. It’s okay to grieve your old life, your potential life, and all the what-ifs. Please stop telling people with autoimmune disease to be more positive.


7. “Feel better soon”


Thanks? I guess? Autoimmune disease is not a flu, or a head cold. It is not an acute illness that goes away with adequate rest and patience. This is one of those phrases that we are taught to say when someone’s sick. It’s like when people say “stay strong” to someone who is grieving, it’s not helpful and it makes us feel like you’re trying to avoid talking about it altogether or that you don’t really listen to us.


8. “You would feel better if you just got dressed and got outside”


Yes, if i could get out of bed and muster up the energy to put clothes on and go outside, I probably would feel better. What you don’t understand is that using too much of our energy can send us into an autoimmune flare that could leave us in pain for weeks or even months. Sometimes, sitting up in bed is enough of a task for someone with autoimmunity. Please respect that.


9. “Everyone feels like that sometimes”


You know when you get the flu and you’re so exhausted it feels like you’ve been beaten up? You’re bed ridden, exhausted and even your eyelids feel too heavy for your face? Imagine feeling like this on a daily basis. Imagine waking up every morning feeling like you have the flu. On top of that, add in individual symptoms like nausea, cold sweats, heart palpitations, weight gain/loss, hair loss, depression, anxiety, random pains, fevers, migraines etc. Telling someone with autoimmune disease that everyone feels the way they feel sometimes is extremely hurtful and inaccurate. It downplays what we go through, and it makes us feel weak. Please stop saying that.


10. “It says online that you just take a pill for that and it gets better”


There is no such thing as a pill to cure autoimmune disease. You can suppress it, you can use pills to help manage symptoms of it, but no pill cures autoimmunity. The pills that we do take often come with a list of side-effects longer than you can imagine, and are sometimes even worse than the symptom you are being treated for in the first place. Trust me, if there was a magic pill we would all be taking it. Your google search does not equate to our years of experience dealing with this disease.


Here are some things you might consider saying instead…


I am here for you.


Please let me know if there is anything I can do to help.


Is there something I can read or listen to that may give me more insight into what you’re dealing with?


Know that our plans are flexible and if you aren’t feeling up to it, we can reschedule.


I read what you shared online (trust me, there's a reason we are sharing it).


If you need to talk, I am here to listen.


I am thinking of you.


Here is what I know for sure…


Most people have good intentions and truly care to see you happy and healthy. Most people have learned over the years that there is a specific etiquette you take when it comes to dealing with “uncomfortable” conversations regarding health and sickness. Most people do not mean to insult you, diminish how you’re feeling or question you. Most people make these hurtful comments without realizing the repercussions of them.


My intentions with this blog have always been to spread awareness of living and dealing with autoimmune disease and I feel that this post is especially important for both the people who suffer, and for the people who have friends and family with autoimmune disease. It is not to attack anyone, it is to make people aware of the impact of their words on the people that they love.


As always, everything that has happened in your life has led you here. Thank you for reading.


Victoria

Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria explores the reality of living with chronic illness through her blog, The Butterfly Effect.

Victoria seeks to spread awareness of autoimmunity and writes to inspire chronically ill patients to live wholesome lives beyond their health struggles.

You can also find more from Victoria by visiting her Facebook and Instagram


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