What Chronically Ill People Wish the People in Their Lives Knew
It's hard being chronically ill.
Chronically Ill People Want To Be Heard
For more than 10 years now, I've been living with multiple chronic illnesses and am still in the process or trying to diagnose what is causing some of my symptoms. My life consists of taking fistfuls of pills each day, constant exhaustion, and struggling a lot harder than everyone else just to do simple tasks.
I won't lie, it's really hard. Some days are okay, but some days feel downright impossible to get through. Somehow, I'm able to. I think a lot of it has to do with the fact that I'm lucky enough to have people in my life that respect my health and well-being. It did take a lot of time on my part to explain what was going on with me, how I felt, and what I was going through to reach that point though, and it wasn't easy. It took years and there were definitely times when I didn't think my friends and family quite understood what I was going through. Some of them still don't and never will, and they're the ones I'll probably never really be close with.
It really hurt, but more than once I had to give up on people that wouldn't put the time or effort into listening to me when I'd always listened to them. Thinking back about these losses got me thinking about what I wished I would have told them instead.
In the chronic illness community, there are a lot of things we wish the people in our lives knew about us and what we go through. Our illness are all different, but there are some unifying experiences that many of use relate to.
I reached out to chronically ill people and asked what they wished the people in their lives knew. This is what they told me.
• "Being sick isn't my fault. It isn't your fault either." -Anonymous
• "I have to cancel plans, often. I never know when the fatigue and flu like symptoms will hit me. Please don't get mad at me. I don't enjoy laying in bed and missing out on the fun either. Also, I can not manage to walk far distances w/out bringing on another fatigued state." -Elise Pearlie
• "I'm in pain all the time. I'm literally never not in pain." -Karen A.
• "Don't tell me not to take my meds, ok? I need them to survive. I don't care if not taking meds helped you I'm not you." -April
• "I blame myself a lot...I feel guilty a lot." -Anonymous
• "Sometimes I like to talk about things other than my illness. It's so tiring talking about being sick all the time." -Sean
• "Usually don't mind being sick, but my family makes me feel bad about it." -Anne T.
• "It really hurts when my family doesn't take me seriously." -Anonymous
Let's Keep the Conversation Going...
What do you wish the people in your life knew that would make your life easier?