What Chronically Ill People Want You to Know

This post is going to be different than my others because it is not based on just my story. In fact this post will be a collection of anecdotes from multiple chronically ill people. By no means does this post summarize the experiences of everyone with chronic illness, but these are some common experiences for many that I have talked to.

As I was chatting with the person who runs my gastroparesis support group, she sent me a story of a chronically ill friend of hers. This friend has unfortunately passed away. Her family found out after the autopsy just how sick she had been. How serious her illnesses were. They felt like she was being dramatic or seeking attention. When in reality she had been begging her doctors for help. Unfortunately it is common for chronically ill people to be misunderstood by doctors, their family, their friends, and society as a whole. So this post is meant to share things that people in this community wish they could say.

Chronically Ill Means Chronic

It is incredibly difficult for a healthy person to understand the concept of never getting better. When they think of illness they think you get diagnosed and you get cured. That is not how chronic illness works. We will have this condition and diagnosis for the rest of our lives. When we say this, we are not being pessimistic or negative. We are stating our reality. Of course there are treatments that can improve our quality of life. We can put forth work to manage symptoms. But there is no cure. We will have flare ups for the rest of our lives.

We Don’t Just….

A line that is heard a lot in the chronic illness community is you just need to…

• Lose some weight
• Drink more water
• Do Yoga/Meditate
• Be more positive

Or the line of you are just….

• A little tired- everyone is tired
• Sore- everyone aches sometimes
• Being lazy
• Seeking attention (or a handout)

These lines are problematic because they ignore the real issues. Could some of these strategies help with overall health, absolutely, but they are not a magic cure nor will they alleviate the bigger issues we have. I have done at home yoga for years and I am still waiting for that yoga cure. They are also problematic because they trivialize an experience that you don’t even understand. For example, we are not a little tired and need a nap to feel better. In fact doctors now compare chronic illness exhaustion to if a healthy person had to stay up for three days straight and try to function in the world.

We are Experienced Actors

Chronically ill people are incredibly good at acting or masking our symptoms and pain. Contrary to popular belief we do not want attention, in fact, we are desperate to do “normal” things. We want to go to work, finish school, date, be a good parent, and/or hang out with our family and friends. Quite frankly if we acted how we felt all the time, people wouldn’t be able to handle it. You might be able to tell that we are dragging or in more pain on certain days. But if you saw how we really felt you would see us curled in ball, screaming, or crying a good amount of the time. We can put on a smile and go about our day with symptoms that would send any healthy person to the ER.

What You See Vs What You Don’t

You likely see us at our best or at least with our best mask on. We might be at work or going out with others and having a good time, but there is a lot that you don’t see in that. Here are a variety of our experiences (from multiple people with different conditions).

• You don’t see the time it took to rest after just taking a shower
• I might show up and run a meeting at work, but you didn’t see me getting sick in the bathroom right before that
• You don’t see me shoving food down my throat so I don’t pass out (when eating it will make me sick)
• I might make it to the big event, but it will take me 2-3 days to fully recover from doing so
• You don’t see me pulling over so I can drive home safely
• I might have made it to dinner, but I spent the whole time focusing on keeping my mask on that I couldn’t pay good attention to the conversation.
• You don’t see me not eating all day, so that I can manage to make it through a gathering
• I once went to a concert with a friend after spending the entire day having to switch my hands between hot and ice water so that my fingers wouldn’t be paralyzed.

What Chronically Ill People Love

Despite the struggles there are people who are incredibly supportive and are there for us. They make us feel seen and not so alone. There are things that these people do that are so helpful.

• We love being invited, even if we have to decline. We appreciate being included in the plans.
• We love when someone just says that they believe us or recognize the difficulty in the struggle.
• We don’t like to ask for help, but we truly appreciate when help is given. Especially when it isn’t made to be a big deal.
• We appreciate when others do their own research on our conditions to try and learn more.
• We love when people are willing to listen and not judge.
• We greatly appreciate when someone stands up for us when others are being rude about our illness.

At the end of the day there are so many things that chronically ill people wish that you knew. As much as we wish you could understand, we also don’t want you to truly be able to understand because that would mean you would have to have a similar condition. And we don’t wish our conditions on anyone.