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What to Say to a Person in Your Life Who Is Chronically Ill

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I’m sorry I’ve been sick. I say that a lot. Every single day, sometimes multiple times. It’s always, “I’m sorry I’ve been sick.”

Sometimes I feel like a broken record. I’m sorry it took me so long to get back to your message. I’ve been sick. I’m sorry I can’t make that appointment. I’m sick. I’m sorry I didn’t come to the party. I was sick. I’m sorry I didn’t respond to your text. I’ve been sick. I don’t know if I will make it because I am feeling sick.  

Most days the pain, nausea and brain fog make it so that I can only concentrate on what I absolutely have to do. On those days I put whatever energy I have into my family and work. On days that are really bad, I can only focus on getting through the day. It takes a lot of energy and willpower to deal with the pain and illness. Then there are the days that I can’t even do that. I retreat into myself. I go into my safe space in my brain, I shut everything else out and I stay there until I have strength again.

I am not lazy. I am not blowing people off. I am not unreliable. I am not being rude. I am tired. I am worn down. I am struggling. I am scared. I am sick.

Try to imagine having food poisoning and the stomach flu at the same time for over a period of years. Can you truly imagine that? Seriously, do it right now. Close your eyes and picture the last time you were really sick.

Remember how you felt. Remember what your body felt like. Keep picturing it. Did your body ache so badly it hurt even when you were lying in bed? Did your skin feel like it was burning? Were you feverish and delirious? Did the water hurt your skin when you tried to take a shower? Did you feel so nauseous that moving a few steps made you throw up? Did the smallest noise or light make you want to pass out because of the intense pounding pain in your head?

Now can you picture yourself dealing with that over and over again for days, months and years? Every night going to bed knowing that the next day you will be sick. Every morning waking up knowing that you are still sick.

It is hard to imagine isn’t it? It is hard to fathom that you could feel that sick forever.

When I would get sick before having a chronic illness, I would always tell myself it was only for a little while. I could get through anything that only lasted a day or so. I can no longer use that reassurance to help me.

I didn’t write this to make anyone feel bad. I know it can be frustrating. I know it’s hard not to make judgments, even for those who are close to me and witness what I’m going through. When you are used to being a sick for a little while and then get better, it’s hard to understand someone continuing to be sick. When you’re not sick, it’s easy to forget what it is like to be sick.

I wrote this because I want those outside of the chronic illness community to try to put themselves in our shoes. To try to understand what is takes to survive a chronic illness.

I want you to know we are not all of things that we have been called, such as lazy and unreliable. To know that we feel a lot of guilt when we are sick. To know that we would rather be at the party instead of in bed. To know that we want to be included even if it is a long shot that we will make it. To know that we truly are sorry we missed the appointment or the text message or the party. To know that when we say we are sorry, we genuinely mean it, and all we want to hear back from you is that you understand.

After reading this, I want you to try to remember what it is like to be sick. If you have a person in your life who is chronically ill, reach out to them right now.

Tell them how strong and courageous they are, but they don’t have to be strong all of the time. Tell them you may not completely understand, but you will try. Tell them you are going to learn about what their illness is to better understand what they are going through. Tell them it’s OK to have bad days.

Tell them you will be there for them no matter how many missed texts or parties there are. Tell them how important they are to you. Tell them you know they’re doing the best that they can. Tell them to stop being so hard on themselves.

Tell them you are proud of them. Tell them that you really appreciate them saying sorry, but they don’t have to say it again.

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Image via Thinkstock Images

Originally published: November 6, 2016
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