Words from a POTSie- Pt. 3

Saturday, December 21, 2013

"The joy you bring us is so much greater than the sadness we feel about your illness." -John Green

I have said already (both HERE and HERE) that illness is hard. Both of these posts were focused on how hard illness is for the sick person. But illness is especially hard on the family as well. It's so very hard to see people you love hurting, and knowing that you can't help them is even harder.

In my last post, I did a list of Ten Tips to (and from!) a Spoonie. This time though, I wanted to do something a little different. So here you go...

Ten Tips to (and from!) a Spoonie: Family & Friends Edition

1. None of this is your fault. Just as we Spoonies shouldn't blame ourselves for our illness, you can't blame yourself for our illness, either. Nothing that you did or didn't do for us has made us like this. We just are.

2. We are hurting... Please remember that we don't want to be this way. All of those times when we don't unload the dishwasher like we should? As strange as it may sound, we probably wanted to. We want to help, but some days we just can't. And that hurts us even more.

3. ... but we know you're hurting, too. Sometimes we have a hard time showing it, but we know this is hard for you, too. We know we're not the only ones who are struggling through this.

4. Have a life. Please don't let us and our illness keep you from living. We know you have a life apart from our problems, and we want you to experience it. We want you to have fun. We want you to keep doing the things you enjoy. So get there and do them!

5. Know your Spoonie-speak. We Spoonies say "I'm fine" a lot, and it's always a lie. "I'm fine" is Spoonie-speak for "I'm not really fine." Because when we're really fine, we don't use words like fine. We use words like "great" or "really good." Also, "I need help" is NOT an over-exaggeration. "I need help" means "I REALLY need help!"

 6. Please don't be afraid of us. Yes, we can be very needy, but please don't let that drive you away. We still want to be your friend, and we still love you just as much as we did before we were sick. Please don't worry that you'll damage us in some way. As fragile as we may seem, we're made of tougher stuff than you think.

7. We know you have problems, too. You might be tempted to hide your problems in the face of what you see us going through. Please don't. We do have our problems, and most days they are more than enough, but we know we're not the only ones suffering. We know you have issues that are unrelated to our illness. And it's OK to tell us about them. It really is.

8. Sometimes, it's best not to ask. It's so very hard to answer the question "Are you feeling better?" In truth, we usually are not. Or if we were, we would tell you first. So most times, it's just best not to ask. If you really want to know how we're feeling, ask. But don't ask if we're "feeling better", because we know you want to hear the word yes.

9. We need you. We could never do this without you. You are an integral part of our world, and we cannot imagine it without you.

10. You are amazing.
We cannot fully express (and you cannot fully comprehend) just how grateful we are that you're still here. That through every doctor's visit, through every bad day you have been there. Not just everyone can do what you do. Not just everyone knows how to love someone who is so very broken. But you do. And for that, you are amazing.


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