10 Things People With Chronic Illness Want Friends To Know

This blog post originally appeared on The Mighty.

Loved ones may believe they understand what their friends with chronic illnesses are going through. But unless they’ve lived with an illness themselves, they may not fully appreciate the challenges their friends are facing, from debilitating physical symptoms to the unpredictability of their health or the pain of feeling left behind.

We asked our Mighty community with chronic illnesses to share what they wish their friends knew about their lives. By offering a glimpse into their realities, they hope their friends will begin to understand how to be supportive and compassionate when plans get cancelled or when someone’s having a tough day.

Here’s what they told us:

1. “I wish my friends could know the real guilt I live with for having to cancel plans last minute. I couldn’t attend my best friend’s wedding because of my illness… We don’t have the luxury of getting a warning.” — Ashanthi De Silva

2. “I wish my friends knew there are no quick fixes, nor will I ‘get better soon.’ It takes a lot of effort to do things. Just because I can laugh doesn’t mean the pain, fatigue and nausea has disappeared. I just want to laugh.” — Kaisha Holloway

3. “It’s painful to know you are always looking through the glass at your life but can’t ever actually get in to participate. I don’t blame you for moving on — your life is busy, full and stressful. I never knew I could be jealous of that. I took that part of my life for granted.” — Jelea N Dan Ulberg

4. “Don’t give up on me. I still care about you and I still want you in my life — even when I have to cancel. If the tables were turned, wouldn’t you ask and hope for the same?” — Shiloh Davison

5. “I scrimp and save up energy to go to events. Everyone says how well I look or that I don’t seem sick. What they don’t see is the next week where I can barely get out of bed because I am recuperating from said outing. I think we all try our best to be present and happy when we are out; it’s uplifting to be with friends. But we do pay a price that most don’t see or understand.” — Elizabeth Prungel Casperite

6. “I wish my friends knew how very hard it is to ask for help, and that sometimes I don’t ask for help when I should. Thank you to the friends who step in when I need them, whether I ask for it or not.” — Julie Pruitt

7. “I don’t always like being alone. Come over, bring a coffee and a snack… let’s watch a movie. I miss you!” — Melanie Johanson

8. “Having to cancel plans is not something I like to do. I’m not trying to come up with excuses or avoid you, I hope I’ll feel better up until I literally cannot make it in time… I’m jealous of my friends who don’t have to worry about over-taxing themselves because they’ll have a flare up. I’m jealous of their independence.” — Sam Vargas

9. “Don’t forget about my partner! If you see him, ask him how he’s doing. In the background he is doing an incredible job keeping our family and house running.” — Jo Walker

10. “How important it is to be able to talk and vent to them about my health, even if the things I say are way over their heads. They don’t have to say anything, just listen (and maybe give me a comforting hug after I’m done).” — Laura Vago