20 Things People With Chronic Illness Want to Tell Their Friends, but Don't

When you are diagnosed with a chronic illness, you might meet and instantly bond with other spoonies who understand what you’re going through. But what about all your healthy friends? When one person’s lifestyle changes due to illness, it can become more difficult to relate to each other or even stay in touch. You might spend your days at home in pajamas while they’re constantly out and about. How do you maintain a meaningful connection?

For those who are healthy, it’s often hard to really “get” what your chronically ill friend is going through if you haven’t been there yourself. And being sick can cause us to worry about being a burden and bringing other people down – so we don’t always speak up about what’s bothering us, physically or emotionally. In order to start breaking down this communication barrier, we asked our community to share what they want to tell their friends about living with a chronic condition, but don’t. Let’s help others better understand what it’s like to be sick.

Here’s what the community told us:

1. “I feel lonely a lot. It’s very isolating being sick and in pain all the time. I’d give anything for you to just stop by with dinner and a movie or a board game so I wasn’t alone with myself.”

2. “Please keep inviting me out, no matter how often I can’t make it. It can make my day just knowing you thought of me and want to spend time with me, even if it isn’t always possible.”

3. “I mostly wish they would remember I’m a person. I need friends, someone to talk to, someone to be silly with, someone to hang out with. Someone who won’t make empty promises.”

4. “That it’s more than just the physical symptoms. That it caused me to leave my job and put me in a horrible financial situation. That the guilt I feel is overwhelming since my husband and I can barely pay our bills. The mental side of chronic illness can be just as difficult.”

5. “I miss the way things used to be, like it was before I got sick. I’m still me. You’re still you. Why should our friendship change just because I’m sick?”

6. “I wish you would learn about my diseases and illnesses, and understand they aren’t going to go away. I’m not going to ‘get better.’ I can only handle my illnesses as best I can.”

7. “I tell most things to my closest friends, but I really try to downplay the level of pain even though they know it’s bad. I couldn’t imagine having the ones I love the most (friends and family) know the true extent of what I feel. No one should have to feel what I feel and the idea that my loved ones even have to know I have pain at all is hard for me.”

8. “You don’t mean to make me feel guilty, but you do every time I hear how disappointed you are when I have to cancel our plans last minute for the umpteenth time. I constantly feel like the bad friend, and I’m so lonely. I miss being the me I was before my illness, but I’m still a good person!”

9. “Keeping up with you intimidates me. I love you and value you, but I’m afraid to hold you back.”

10. “That I’m really, really scared because of it. I’m scared of what my illnesses are doing to my body, of what they could do to my body, of what my future will look like, of losing my friends if I admit how scared I am and if I admit how much more help I need than I ask for.”

11. “Just because I can’t physically spend time with you doesn’t mean that I don’t need you. Just one text message can brighten my whole day.”

12. “I wish you would just ask me what it feels like to be me. Ask what it’s like living my life in pain and exhaustion day after day after day. I wish you would care enough to ask me to explain what I go through, rather than judge me for canceling plans or for being slow to commit to plans.”

13. “Please don’t assume that just because I am up and walking around means I am fine. It probably just means I have things to do regardless of the pain.”

14. “That while I know they think it’s funny to make fun of people who have to run to the bathroom all the time, it really isn’t that funny to me. It’s hard to feel like you fit in when everyone is laughing at a problem you face daily.”

15. “When a friend says, ‘You know you only have to ask for money,’ they don’t realize they’ve set up a power struggle that reinforces my feelings of the illness victimizing me. It makes me an outsider: me vs. them. My friends love me, I know that. They know I can’t work regularly, that I use the food banks, that I don’t own a car or go on vacations. But somehow they can’t internalize the relative poverty I live in. If they feel led to, just surprise me once in a while with a gift. That would make me feel much more like a peer and better understood.”

16. “I’m sorry I’ve been so distant. I’m sorry I constantly change or cancel plans. I don’t mean to be ‘flaky’ or seem like a bad friend. I’m just trying to get through each day.”

17. “I’m very scared you’ll leave when you discover the severity of my illness. We’re very young, and I understand you may not be ready to have someone this sick in your life.”

18. “I may be sick most of the time, but that doesn’t mean all of the time. Not being invited to things is worse than not being able to go.”

19. “Please talk to me about more than my illness. It has consumed my life, but that doesn’t mean I don’t want to talk about anything else. I still like to talk about how you’re doing and that funny video on Facebook. It’s a relief when someone can talk to me about ‘normal’ things.”

20. “I wish you would remember I do need your help. I can’t always be independent anymore. Please don’t act like they don’t exist. I’m still learning to accept my weaknesses. I need your support.”

What’s something you want to tell your friends, but don’t? Share in the comments below.