Its always hard to explain what you are facing with your friends, because they have not experienced it yet, and will they understand your feelings and pain that they don’t experienced ?
Now It’s time for our friends to recognize what’s really going in our life. How hard it is for us living with fibromyalgia and other chronic illnesses. And let the understand how their lack of support affects us, or how their positive support helps and encourages us and provide us strength in low times.
We asked from our community “Living with fibromyalgia and Chronic illness” a question What’s something you want to say to your friends about your illness, but don’t?. And they share their thoughts with us that we compiled below for you.
Here is what community share it with us:
1. Cindy Jo Wroe — I wish my friends would just call me or even text once in a while, it’s not like I asked for this horrible disease but it’s like oh well she’s not able to do this or that so why bother 
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2. Martha Penny — That when I’m in the worst pain that they don’t understand i want them to experience it so they will understand how i feel
3. Natalie Attoe — How much it really hurts and how they don’t ever see the true me. They see me when I am round their house or they are here but the don’t see my recovery from spending just an hour with them. I give a lot to spend time with my friends but they will never know how much.
4. Kim Stumpf –– That I miss you. That I feel bad for all the times I’ve said no to going somewhere or had to cancel. That I feel selfish and guilty about that. That I don’t want you to feel sorry for me or treat me any different. Just have patience with me but don’t leave me. That I would do everything that you do if I could. That sometimes I’m jealous and envious that you can do simple things like go for a walk. That my chronic pain and mobility issues embarrass me. That I’m tired. That I hurt all the time. That I’m angry about that. That I just want me back. And that I’m starting to forget what the ‘normal me’ used to be.
5. Ashley Rasmussen — That sometimes I avoid making plans for fear of having to break them at the last minute. I sometimes feel ashamed to say anything about “still being sick”.
6. Jasmine Palmer — That making judgements about what you think I have can be hurtful. Me and my health providers know what I have and how it actually affects me. I don’t need to hear what you think I have and what I should be doing. Especially when you think I am a hypochondriac because my health conditions affect me in so many ways. If you aren’t living my life, please don’t tell me I’m doing it wrong.
7. Alison Holliman — How much I hate leaving work early and calling in because I can’t get out of bed. I would much rather be at work than at home miserable. And please don’t compare it to your cold, I would love to just have a cold!
8. Maria Helmine Kvernemo — That the pain makes me do weird things because I’m always tired. How I wish people did’nt stop asking me to join them. That I feel like that girl with the chronic pain. How people don’t understand that I’m constantly in pain. That when they touch me, it feels like they are hitting me as hard as they can. That they get mad at me if i promised to come, and was’nt able to or complained that one time. And how i don’t talk about it, because no one wants to hear it. And most important: How it get annoyed when their always having advices, like I have’nt tried most of it before….and they makes it sounds so easy….
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9. Lili Wright — Being positive around them has become ingrained in me. I can only feel at ease when i’m not around anyone anymore. The phrases “i’m okay” and “i’m fine” have become such habitual answers
10. Adam Bass — It’s not that I don’t want to hang out with friends that live farther away, it is just hard for me because I cannot predict how my body will act and taking something like an uber by myself when I am not feeling great is uncomfortable for me.
11. Marco Berrios — I don’t tell certain friends how sick I am. I also don’t tell them that I’m not working. I used to be both a professional graphic artist and social Worker. My friends from college & colleagues from past jobs I’ve had have advanced in their careers and are successful. I love my friends and I am very happy to know them. It’s just personally embarrassing to say I am living off of social security disability.
12. Danielle Meier — I’m in pain at that moment. I’m jealous that their life is simpler but can’t say anything. I love them but I could care less about how terrible their cold is. Please keep inviting me even if I can’t go. I’m not ok. I’m trying not to cry this very second. How I feel like a burden to everyone so I pull away even more.
13. Jennifer Michelle — I hate when I get the looks and judgement that I’m the last one there and the 1st one to leave. I’m happy I was able to fight the pain enough to put my face on, make it out and socialize with a smile as well. Please don’t take it personal when I can and can’t do these things. I don’t choose, it’s never up to me
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14. Connie Sharpley — I would say is there anywhere I can sit and relax if I’m starting to have pain. And please don’t be angry if I have to leave early if I’m not feeling well.
15. Michele Hanko — summarize it in this way :
–> Don’t give up on me.
–> I don’t need or want sympathy. I don’t feel sorry for myself….why should you.
–> Call/text once in a while just to see how I am doing.
–> Keep inviting me over or to go out even when I say I can’t go.
–> Understand that having to isolate myself and not communicating is not because of you or that you did something wrong….it’s my illness flaring up. Give me a few days to regroup then I will reach out to you.
–> Understand I have to pace myself. I have to plan out everything I do and don’t do within my day so I can keep my pain and symptoms to a minimum.
–> Don’t judge what you don’t understand.
–> Do your own research on my disease. Read my posts and the ones I share on Fibromyalgia. Take the extra step to read all the comments in the post. This will better help you understand about my illness. It will also show you how many others are also dealing with living with chronic illness. I am not the only one.
–> Discuss your thoughts with me. I will gladly educate you on my disease and all that goes with it.
–> Know that no matter how much pain I am in or how bad my symptoms get I am strong. I will fight this disease with everything I have. I am happy inspite of my pain and limitations. I am grateful for everyday of my life.
–> Don’t feel sorry for me or judge me; just understand what I go through.
–> No, I’m not always sick, I have a chronic condition, this is just my life from here on out.
–> No, my doctor can’t fix me and there isn’t a magic medication that will make it go away.
–> The doctor can only treat my symptoms to try to make my pain somewhat bearable.
Join the support and discussion group “Living with fibromyalgia and chronic illness” . If you want to add something to the list, put it in the comments below.
