What do you wish people understood about your chronic illness?

Written By: JoJoisms - Jan• 17•17

Here’s your chance to explain how you feel and ask for what you’d like people to know about your chronic illness/issue.

I’ve talked to so many people who say that nobody who doesn’t deal with this on a daily basis can possibly understands what it’s like.  I agree.  Most situations that are not experienced personally cannot be fully appreciated.

Most people who don’t have to struggle with daily pain or fatigue or limitations can’t really have a proper understanding of what that person goes through on a consistent basis.

However, if we explain it to them, they can at least have an idea of what it means to us…to you.  So here is YOUR chance to explain.  Here’s is your chance to be heard.  Here is your chance to be better understood.

I’ve started us off with my Silent Pain poem. You may write a poem, post a YouTube video, song lyrics, or just write from your heart.

My heart is to allow you to be heard.  Allow you to express your grief, frustration, passion, struggle and be understood.  Maybe you can share this blog post (after folks have shared) with your loved ones so they can read through the comments and be a bit more understanding of what you go through.  Maybe someone else can explain one of the things you deal with better than you could.  I could.

So I’d like to take this week, this time, and allow you, my readers to share from your heart in order to help educate others who don’t understand.  That way each of us is comforted in knowing we are not alone.


What one thing do you most wish others understood about your chronic illness/issue?


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  1. Susan says:

    I have been accused of using my illness to not do things I don’t want to do! I wish they understood that I have to pick and choose what I do based on my pain and fatigue for that day or a group of days when I am around my inlaws. They see me do something that doesn’t involve them and get mad when I don’t do something with them. Please understand, I do most everything with them but if it is something that I realize I will lose my energy halfway through, then I politely decline. And that’s when they tell my husband I “use” my condition as an excuse. It is very hurtful to me that they talk like this behind my back and after 16 years of me explaining me condition, they refuse to understand what I go through. I really do get frustrated with their attitude toward me 😣

  2. Patricia Jaracz says:

    The illness doesn’t completely define me–it is only a part of who I am.

  3. JoJoisms says:

    I agree, Patricia!

  4. JoJoisms says:

    I agree, Susan. It is very hard for people who don’t deal with this daily to really understand. Sometimes they don’t really want to understand.

  5. Larissa says:

    I cant plan or commit to something ahead of time. I just dont know how I will be a week from now. If I have to back out of something its usually only hours before, which I hate doing. It makes me look like I cant commit to things or dont want to do things. So the invitations stopped. Life is easier, but on the days I do want to see people, I cant.

  6. JoJoisms says:

    (((Hugs))), Larissa! I certainly understand.