In the summer of 2015, I was diagnosed with Still's Disease, a rare autoimmnue disease that effects 1 in 100,000 people. It causes salmon colored rashes, daily fevers, severe arthritis, lowers your immune system, gives you a fast heart rate, causes pneumonia, as well as depression and anxiety. There are other symptoms for Still's Disease, but I only listed the main ones that are also the most common. I have been living with this autoimmune disease for the last 10 months, and over these months, I've heard a lot of comments from people who are not dealing with a chronic illness of their own. Because of this, I have decided to write this blogpost on things you should
not say to a person who is dealing with a chronic illness. I will then address the best way you can encourage and support someone who has a chronic illness, such as Still's Disease. Here are my list of things you should never say to a person dealing with a chronic illness:
"But you look so great!"
Okay, this is one of the most frustrating things that can come out of a person's mouth. I understand that when you say it, you mean it as a compliment, but it doesn't always feel that way. Living with a chronic illness is difficult because the
inside of our body is attacking itself, not always the outside. So while I may appear put together and cute on the outside, on the inside my immune system is failing, my body is attacking itself, my bones are deteriorating, my heart is moving too fast, and I'm struggling with constant anxiety and fevers and joint pain. Often times people with chronic illnesses put on a brave face, but on the inside we are battling constant pain and insecurities.
"But you're fine, right?"
We need to establish some rules when using the word "fine". When you say, "But you're fine, right?", it doesn't come off as a positive thing. Whenever a person asks me this question, my gut reaction is to say, "yes! I'm fine!" and pretend like everything is right with the world. But on the inside I'm fighting my own fears and pain and emotions. When a person with chronic illness says they're "fine", it doesn't actually mean we are fine. Often times I respond with saying that I'm okay, just because I don't want to appear whiny and annoying and depressing. That, and it gets tired having to repeat the same story over and over again.
"You don't look sick."
The thing about chronic illnesses and autoimmune diseases, is that they're really good at hiding themselves. Aside from my daily fevers and salmon colored rash, the world wouldn't be able to notice that I was physically sick. Just because I don't look sick, doesn't mean I'm not. It's one of the hardest things for those of us that are dealing with chronic illness, to hear you say that we don't look sick, because it sounds like you're undermining our pain and sickness and frustration.
"You're too young to be sick."
I would like to take this time right now, to point out that nobody is ever too young to be sick. Chronic illness and sickness could happen to anyone, no matter how old or young they are. So please don't tell us if we're too young to be sick, because chronic illness doesn't have an age limit.
"Have you tried ______"
Pretty much every person I talk to asks me if I've tried _____. They've asked me if I've tried supplements or vitamins or different diets or natural methods or medicinal methods. Almost every time someone asks me how I'm doing and how things are going with my disease, they ask me if I've tried _____. I understand that when people ask me if I've tried some method they are asking about, that they are just trying to be helpful. But the problem is, almost always none of those methods will work. Because chronic illness isn't like a normal sickness that goes away after a week or two. It lingers, sometimes all of a person's life. The other part of this is, that if you aren't a medical professional or my doctor, then I probably won't try what you're suggesting. My doctors are doing everything in their power to keep my body up to speed and to prevent my disease from getting worse, so don't you think they're doing all they can? Yes, yes they are. Therefore, if they haven't suggested to me what you are suggesting, chances are, I most likely won't try it.
"You should get out more!"
Sometimes people express to me that they wished I would get out more. People get frustrated when I'm unable to show up to events or I can't drive some place to meet them or I can't attend a party or get together. The fact of the matter is, as much as I would love to get out more, I physically can't. I am either shackled to medications (daily injections) that have to be done at a certain time of the day, too tired, or in too much pain. Whenever someone tells me that I need to get out more, I feel depressed because I
can't get out more, and it's out of my control. So please don't tell someone dealing with a chronic illness that they need to get out more, because mostly, it will just make them feel sad and depressed that they're unable to.
"You're just having a rough day."
I hate when people tell me that I'm just "having a rough day", when in all actuality, I'm having a rather good day. On a really bad day, it's hard to stay awake or get out of bed or walk normally. On a bad day, it's hard to get motivated to be happy and do regular chores and get cleaned up for the day. But on a good day, the illness is docile enough that I can get up and go about my day with my new sense of "normal". I can get up and get dressed and appear presentable and stay awake for the better part of my day. So if I am talking to you and discussing how I'm tired or my heart is racing fast or I'm feeling nauseous or my joints hurt, don't say I'm having a rough or a bad day. It's frustrating because I want people to recognize that I am pushing through the pain and the fatigue, and therefore, I am actually having a good day. Also, there is no "having a rough day", because most of the time it's having a rough few days, weeks, or even months.
"I know how you feel."
Unless you are a person who is also suffering from some sort of chronic disease or extreme sickness, you do not know how I feel. I know that you're trying to make me feel better and find some common ground, but it really isn't working. It also makes me feel like you're undermining my disease and not recognizing how hard it is living with it. Please, don't say you know how I feel, unless you are suffering and in the same situation I am.
"But you'll get better, right?"
Whenever people ask me if I'll get better, I find it hard to answer their question. First off, I wish that I could say I will get better, and I appreciate that you are being hopeful and positive for the future. But, I have to say that there is a big chance that I won't actually get better. Chronic illnesses can't be cured, they can only be halted. It's like pausing the disease or slowing it down; medicine can't actually take it away. There are some cases where chronic diseases can go into remission, but remission isn't always for sure and even if you do go into remission, many people will get the disease again, and it will be a violent cycle. So please don't ask me if I'll get better, because honestly, I don't know.
"Just stay positive."
I hear the whole "just stay positive" speech a lot from people. I realize that you are trying to encourage me, but it isn't really working that well. Instead, when you say "just be positive" or "keep your head up", it makes me feel like you're undermining my disease and also undermining all of the emotions I am feeling. Instead of telling someone who is dealing with a chronic illness to "stay positive", try empathizing with us instead. That will speak much grater volumes, than if you tell us to hang in there.
Those are my top ten things that you should
never say to a person dealing with chronic illness. Now that I have given you my list of things
not to say, I thought I should give you a list of things you
should say and do. This way you are equipped in how you can best support them and help them through this difficult time.
Research their illness
I cannot stress this enough! The best thing you can do for someone suffering from a chronic illness, is research their illness. When my mom was diagnosed with Lupus and then later I was diagnosed with Still's Disease, we started researching our illnesses. After that, we wanted everyone else we knew to also research our sickness, so that they could best understand what we are dealing with. Not only that, but in an emergency situation, your friends will hopefully know how to act and handle you based on your chronic illness symptoms and problems.
"I believe you."
There were so many times that before I was diagnosed with Still's Disease, that I was wondering if I was actually crazy. I am so not the person to get stressed about getting sick, nor do I get sick that often, and I also used to never be tired. Like, ever. But after getting sick and going through the motions, the best thing that I could hear from my doctors and family (especially my mom), was that they believed me. They believed I was suffering and dealing with some sort of illness. That is the best thing you can say to a person when they are suffering from a chronic illness - that you believe them!
"Can we hangout at your place?"
Since going out is something that is harder on a person suffering with a chronic illness, offer to come over to their house and hangout. We still want to do something despite the fact that we are sick, and if you offer, chances are we will most likely say yes because we want to spend time with you and still have fun!
"You are so strong."
Battling a chronic illness is exhausting and can really put a strain on both your body and your emotions. One of my favorite things to hear from people, is that I'm strong. I love when people praise me for fighting this battle and trying my hardest to pull myself together. It helps me because they are recognizing that I am struggling, but they are commending me for the effort I am putting forth.
"I know how hard you're trying."
People struggling with auto immune diseases love hearing that you recognize how hard we are trying. It makes us feel empowered and encouraged that even though we are fighting an illness and constantly fatigued and in pain, that you recognize how we are attempting to put forth an effort and have a relatively "normal" life.
Bring them food or offer a helping hand
With a heart rate that is almost always over 120 bpm, I am constantly hungry, due to the fact that I am burning so many calories literally just doing nothing. So I love when people surprise me with food or something good to drink, because I am hungry all the time. Also, don't be afraid to offer a helping hand whenever you see a person with chronic illness struggling to do something. We are still getting used to the fact that we can't do all of the things we used to, so you might have to offer your help in order for us to realize that we actually need it. Not only that, but it shows us you care and you want to help us.
There you have it! My top ten things you should never say to a person dealing with chronic illness, followed by the top six best things you can say or do for a person suffering with chronic illness. I hope this opens your eyes to the world we live in and teaches you the best way to interact with those of us living with an autoimmune disease.
