10 Things I Wish People Understood About Invisible Illnesses

Life can be hard, but factor in living with two invisible illnesses (I have arthritis and lupus) and it can sometimes feel impossible. “Invisible” means I don’t “look” sick to others. After being chronically ill for the majority of my life, here are 10 things I wish people understood to make my life a little easier.

1. I’m more than just the “sick kid.”

Yes, I know I’m sick. But I’m also a human with feelings, skills and abilities. Granted, I might do things differently or take longer to do them, but I still do things other than being sick. Being referred to the “sick kid” eliminates all other possibility of me living to my potential.

2. If I need help with something, I’ll ask you.

Freedom and autonomy are important to everyone. If I’m struggling with a task, I’ll ask for you help. When you patronize someone, you’re diminishing his or her autonomy. Trust me, if I’m flaring and having trouble tying my shoe, I will ask you to tie it.

3. Please don’t judge me or anyone else with invisible illnesses.

You really don’t know someone’s experiences until you live them. Yes, we might look fine, but how do you know we just didn’t just come from a three-hour IV infusion of our weekly medication? It’s hard to judge an experience without actually having it yourself. Also if we tell you we’re tired, don’t suggest getting more sleep at night because sleep is the only thing I’m thinking about as a chronically ill person, and it’s just not that simple. Our nights sometimes entail a lot of pain and often watching the sunrise.

4. Let me live and learn.

This one is for all the adults and doctors. Have faith in me and trust me when I say I know my limits and what I should and should not be doing. I’m 22, and yes, I’m going to go out occasionally, but that doesn’t mean I’ll be out until 4 a.m. And if I am, I take responsibility for it and feel it the next day, trust me. We all want to avoid that extreme fatigue.

5. There are good days and bad days for people with invisible illnesses.

Some days we’re alert and productive and make the best company. Some days we’re the complete opposite. I like to call it “caught in the lupus fog.” It often has nothing to do with the activity planned or the person we have plans with. I’ve missed multiple lunches and parties because I just lacked the energy to get out of bed and socialize. Please do not take this offensively. We don’t mean it to be offensive, and we might beat ourselves up enough for the both of us.

6. Don’t worry about my future.

The future is often a big topic in conversation. We meet people and discuss college graduation, graduate school, career paths, marriage and children. Sometimes after I discuss my plans, I feel courageous enough to tell strangers my diagnosis. That’s when things change.

“How are you in college?”

“How do you plan on handling the stress of graduate school?”

“Can you have kids?”

Please don’t ask these questions. I might not have all the answers, but I’ll figure it out when the time comes.

7. Please don’t be overly sensitive or change plans for me.

My coping mechanism for being sick is humor. I’m always making fun of my illnesses or myself. I appreciate people being nice, but you don’t have to alter your plans for me or tiptoe around the topic. We can talk and laugh about it.

8. We are our own advocates.

I believe we “sick” people sometimes forget we’re actually in charge of our own lives. Between doctor visits or hospital visits, we can feel lost at times. Don’t forget we get to decide what works best for us, so if we want something done, we’re allowed to have a say.

9. I don’t want sympathy when I talk about my illnesses.

Sometimes I just need to talk. I don’t want you to feel sorry for me; instead, I want you to listen. We talk about our illnesses to spread awareness and knowledge because not all diseases look the same, and sometimes you can’t tell people are sick (hence the word “invisible”). We talk to let people know what it’s like.

10. I’m going to be OK.

Being sick is by no means easy. But personally, I wouldn’t change anything about my life. My illnesses have given me insight and amazing opportunities. I’ve met many great people and done amazing things. And I believe people with invisible illnesses are going to be OK. Days are going to be hard, but I believe we can get through them. I mean, we’re kind of like superheroes with the whole “invisible” thing, right?

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.