Basic Manners

This blog post has been on my mind and heart for at least 2 years but I chicken out every time. I have finally decided now is the time to do it. I am going to give a quick basic guide of how you should treat someone with a chronic illness whether they use a wheelchair or walker or neither of those things. I hope this blog post will be helpful as some of this stuff you may not even think about, which is ok, that is why I am writing this blog post.

I am speaking out of my personal experience as these things have all happened to me.

  1. Please don’t make jokes about how lucky I am to be sitting in a wheelchair when we are waiting in a long line. I know it maybe uncomfortable for you and you don’t know what to say but I would rather you say nothing at all then say something hurtful.

2. If you in the same aisle or walking down the sidewalk, etc please know it is much easier for YOU to move than a wheelchair and also it is ok to wait like 2 seconds for us to go through than you trying to speed by.

3. I was guilty of this before I got sick and I regret it so much! Please know that there is usually only 1 handicap accessible bathroom / fitting room / etc. Please try to leave those open. Remember when we go that is our only option where you have usually 3-5 ones that you can use. Also please know some people you see go in a handicap accessible bathroom/ fitting room might not “look” like they need it but they do. They could have other medical conditions they could have an ostomy bag and need a larger room to do things. I know things can come up and sometimes you need to use a larger room for different reasons this is just something to please think about.

4. Be aware of where handicap ramps are and please DO NOT park directly in front of them. This makes it awkward and sometimes we have to go the long way around to find another one to enter or leave some place.

5. Opening doors can be so helpful! When you turn around and see someone coming in a wheelchair and you just walk away it can be hurtful. Also just a random act of kindness maybe a mom has her hand full of groceries etc opening the door for someone can be so helpful. I always say thank you when someone helps out like that.

6. Don’t say to someone that we would get better if we exercise. You don’t know what the doctor has told someone. I have been told by several doctors I can’t exercise anymore. The only “activity” I am allowed to do is walk around the house when needed with my walker. I am not to walk far, I can’t do water aerobics anymore. Trust me I wish I could exercise. Before I got sick I was running a mile almost everyday and I loved it. Please know even if you have the same diagnosis as someone you have a different body and we are doing what our doctors have deemed best.

7. It can be hard for someone with a chronic illness to constantly be told we look good. We feel miserable -we have become masters at putting on a fake smile and pretending we aren’t in any pain. On our bad days you usually don’t see what we look like because we are at home. Thank you for the compliment but you need to be really careful about how and when you say “oh but you look so good”.

8. If you post something on social media about a symptom you are experiencing or anything else and someone messages you trying to sell you something that is NOT OKAY to try and make money off of someone who is sick. Also put yourself in our shoes, how would you feel if you were sick getting several messages a week about a “miracle” cure or a supplement? It gets hard mentally and its exhausting.

9. Let them eat the CAKE! Seriously our lives are already hard enough if we want a pop or a piece of cake. LET US! We have so many restrictions we don’t advertise all of them for you to know. I don’t judge what you eat or drink so what makes it ok for someone “healthy” to make judgment on someone who is sick.

10. Do not say “it’s good to see you finally here, I see you go here and here quite a bit its nice you made it here” while you may be saying it in a place of love it can be really hurtful. Think back to the spoon method, remember we have to choose carefully what we spend our spoons on. Maybe that day the event was held I spent all of my spoons and today I am feeling better. Try saying “it’s good to see you” just say a compliment don’t make it a compliment sandwich.

11. BE NICE & BE KIND

Sometimes I make jokes with my friends and family and that is ok. These are people that are extremely close to me and know me. Usually no one makes a joke unless I make a joke first. Somedays I may not be in the joking mood. My family knows what I am ok with and what crosses the line. When you go in public you don’t know everyone and that is why this stuff isn’t okay to do. We have a hard enough time living with this daily and these added stresses make it a lot more difficult. Thank you for reading this blog post and letting me open up a bit.

Just remember sometimes it’s better to just smile than to say something that could potentially be hurtful. Remember you have no idea how someones day went. They could have just gotten a horrible diagnosis, lost a family or friend this week. Just like some chronic illnesses, grief, pain, a bad day can appear to be “invisible” so just be kind!

xoxo,

Abby

“Be strong and take heart, all you who hope in the Lord.” – Psalm 31:24

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