What Your Friend with Chronic Illness Wants You to Know

It's incredibly frustrating at times to explain how you feel, why you can't do something or what your boundaries are to someone who isn't going through it themselves. I've found myself completely flustered and feeling hopeless trying to make some of my loved ones understand before I realized that they just cannot truly understand it and that's okay- actually, that's awesome because I wouldn't want them to experience these struggles.

I've been blessed enough to have a couple of real-life friends (I say real-life to distinguish between my pocket-friends, those amazing, supportive fellow Spoonies I meet in chats, social media networking and on support group boards) who are also Spoonies and generally know what I'm saying when I'm trying to explain myself.

The biggest thing I wish I could get everyone to really know is that what I need more than anything is for them to just be there. No pushing, no pulling, no advice... just keep loving me. Trust me, I've tried, at some point in the last decade and a half, just about every pill, vitamin, diet, breathing exercise, cognitive behavior therapy, miracle cure, etc. I've Googled my brains out. I highly doubt you're going to suggest something I haven't thought about or tried. 

Unfortunately, some of my conditions are chronic. They aren't going anywhere. I believe in the power of prayer. I know that if God wants to lift this off of me, He will. There have been so many times I've cried out to Him and He's given me rest, relief or gotten me through a moment I found unbearable. However, I'm accepting of the fact that He's allowed this for a reason and it's up to me to make the best of it.

I reached out on social media to ask what some others would want their friends to understand about their illness or being a Spoonie and this is what some of them had to say:

• The pain is there even if I'm pretending to be normal and your laundry detergent is giving me a migraine.
• The story is inside, not the pretty cover for my kids.
• It's not a choice.
• I have about half the energy on a good day compared to an otherwise healthy person. On a bad day its about 10% of a healthy human.
• Every aspect, every second of my life takes so much effort and it is filled with immense pain. Be gentle.
• I still want to be asked to do things or be told about things. Treat me normally even if I can't get out or make it.
• I may not always see them but I love them unconditionally.
• I still want to be asked. Don't just assume I'll always say no. Give me a chance.
• It could happen to you.
• I didn't ask for this and don't want this so please stop treating me like I can change it so easily.
• I don't expect you to fully understand, I just want you to understand enough to not hurt me.

These responses came from fellow Spoonies with a wide variety of types of Chronic Illness so they definitely aren't "one-size-fits-all" but do convey very common thoughts and wishes amongst many of us.

If you have a friend that you really care about and you've seen them label themselves a "spoonie" before, this might guide you in the right direction but I would encourage you to ask them personally what the one thing they truly want you to understand is and then be patient for a response- sometimes some of us can be too tired to even explain what's going on in our lives or bodies. Taking the time to read this post shows a huge step of dedication to your friendship and that is an incredible thing. Thank you for that and please continue to be a source of support and love.