The RIGHT Things to Say or Do Around Those With a Chronic Illness

 Sometimes I feel like I am the elephant in the room. I don’t like that. I recently wrote an opposite post, about things NOT to say, so I needed to follow up of course with good interactions that I have had with a chronic illness. This can apply to anyone with an illness that is life altering. I am a little less “piss pot” -like writing this post. So I am ready for a more positive and uplifting post. Things to say that make those of us that are sick not feel like the elephant in the room. 

The rainbows, butterflies and unicorns that get me through are coming back. 🙂 See, now you get the thumbs up for the things that you do or say that means the most to me. 🙂

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As you read in my recent post, almost all the “wrong things to say or do”, were done with good intentions, but some just come across as very wrong and insulting to us.  What are some things that are good to say or do, to offer your love and support? 

I had mentioned before, don’t throw out empty messages like “call me if you need me!”. If you really truly want to help, offer to do something specific. Simple things like bringing over dinner, running an errand, offering a ride, can mean a lot. Something like getting me out of the house even for a short while really makes my day.

My good friends have brought me to a couple of stores, even though I need to be helped and “chaperoned”, or had to wait out in the car while they paid for my stuff. That is a great gesture. My best friend brought me to a farm down the road and had her son pull me around in a cart the other day. We were gone for less than an hour. But it gave me a shot of positivity… much better than a b12 shot! 

I care about you, I love you. Major things that sometimes we need to have reassurance of. I know that everything has changed for you too, especially if we are close. I feel horrible about that, even though I have no control over it. Do you still love and care about me?

Sometimes we feel forgotten while life passes us by. The extra going out of your way to make us know that we are thought of is great. A call, a text, a note. 

I lost it when I was first sick and started have major twitching and body rocking. I was talking to my best friend, who has been there since day one, with full support I should add, and just bawled my eyes out. I thought Dave was going to leave me because I would be too much for him. I was scared. My best friend gave me a hug (anyone that knows me knows I am not really the “pressing bodies” as I call it type of person, but she did) and reassured me that everything was was going to be ok. She always knows what to say to make me feel better, and that I am valued and loved

For someone especially in a relationship to go from complete independence to reliance on others is a tough transition. Some people need to be taken care of. 

For months, Dave had to give me a bath because I would become hypothermic and unresponsive even though the water was scorching hot. After bathing me, he had to get me out of the tub and dried off as quickly as possible and make sure my body temp went back up. 

He has seen it all. Lived this experience with me. Watching me suffer, have seizures, uncontrollable fits of rage, been around with my tics, and at my worst, sat next to me while I was in a vegetative state, staring into nothing. Sometimes I would rock bath and forth, back and forth. Even though I was hazily there inside, I was not me. 

Over a year later, I was wrong about Dave. I needed more faith in him, because he is amazing. Beyond amazing.  He has always made me feel like I was important, like I was the same ol’ Kimmie he fell in love with, and made me feel I wasn’t a burden to him. 

I support you. We all just want people to be on the same page as us. Being sick you often have lots of medical decisions, you might not agree with all of them. The important thing is to be behind us during our journey. 

For me, it cheers me up when people acknowledge my positivity, despite my struggles. I have kept my held up high and have had high hopes throughout this process, even though sometimes I feel like I am never going to get better. It makes me feel like people “get it”. And maybe they can learn something from my experience. 

I love it when you treat me like I am ME. Not a disease. I have been so blessed to have a lot of the people in my life that do. I can be having a horrible bout of tics, yelling, clapping, doing the thriller dance, and it doesn’t even phase them. It does not embarrass them to go out to dinner with me.   

Sometimes they joke, but it is always light hearted and never hurtful, and there is no wrong in humor to lighten a horrible reality. I love humor. I use it all the time. If I didn’t have a laugh about how much things really suck, I would be crazy. I would be depressed. I get through a lot with a sense of humor. Make me laugh. 🙂 

“I don’t even know what to say..” Sometimes hearing that is the best thing to say if you really don’t know what to say. When in doubt, it is better not to say anything. And that is okay. We are just as uncertain as you are. I get it. 

Let us know that it is OKAY to vent if we need it. I personally don’t like to constantly talk about how I am doing. I feel like that is a “Me me me me, oh my god me!” sort of thing. I love to hear your stories and the latest gossip. 

But when we just need to bitch as long as it is NOT 24/7, as that comes off as whiny… and believe me, there is a difference between whining and venting, it is okay and you will listen and show us your support. 

I have mentioned in my previous post, “What NOT to Say to Someone With a Chronic Illness”, about the “how are you doing, how are you doing?!” and how I find that annoying. But there are better things to say. As long as it is not every second.

 “How is your day going?” is a much better question to ask if you choose to ask. It sounds similar but it is VERY different in my mind, at least. “How are you doing?” forgets the whole aspect of CHRONIC = persistent for a long time, or constantly reoccurring. A specific day is much different. It makes me know you are acknowledging that each day can be different for me. But be understanding if we DON’T want to talk about it. 

Maybe that one is just me. Is it just me? You tell me, my chronic illness friends! “How is your day going?”. Better, right? 

Advocate. Learn about our illness. Ask how it affects me. A lot of my supporters have watched the movie, “Under Our Skin” , free on Hulu and have  browsed online to learn more about Lyme and co-infections. Different deficiencies and everything else that has fallen apart inside of me. Friends have sent me links or newspaper articles about Lyme and co-infections.

My Mom, who has daily struggles of her own, goes out of her way to tell me about information she read on the internet. That shows she is learning and that she cares about me. And wants to share with me what she has learned. 

Dave isn’t a researcher as he isn’t much of a reader, but he is my voice. He asks questions and pays attention at my appointments. He adds things I forget to mention. He even called Dr N (the LLND that I dumped), to advocate for me because I was so sick without any antibiotics, and he fought enough with her that in the end I got some to help me function again. Be my voice. Advocate. 🙂

If someone says something mean about me, stick up for me. That is what a friend does. Period.

A much more positive post! My head was no longer steaming like a tea kettle ready to explode. Hope everyone has a great day! Think positive, and with the right people in your life, it will help you stay positive. 🙂 🙂 🙂 

http://www.cnn.com/2012/09/11/health/invisible-chronic-illness/,http://www.anapsid.org/cnd/coping/looksick.html, http://www.bandbacktogether.com/how-to-help-a-friend-with-chronic-illness/www.hulu.com (Under Our Skin Movie) http://www.focusonthefamily.com/lifechallenges/emotional_health/living_with_chronic_pain_and_illness/ministering_effectively_to_the_chronically_ill.aspx

10 thoughts on “The RIGHT Things to Say or Do Around Those With a Chronic Illness

  1. This was nice 🙂

    I agree about the “how is your day” thing. I have people say to me almost every day “oh, you’re hurting today aren’t you”….. yes, I hurt every day, thanks for noticing yet again. *sigh*

    I never used to be a close hugger either, but now I like it. Thank you for the post.

  2. Great that you turned it around and thought of this stuff. I always want to spread around the “what not to do/do for chronic illness” posts and things I’ve read but the thing is the people who do the right stuff are the ones who read it and the others just don’t. Because they think their way is the right way and dont want to be told otherwise.

  3. You are an inspiration to me on my Lyme journey, thank you for sharing. I am always at a loss when asked how I am doing. I often ignore the question and reply with today is …..
    This post made me remember the word advocate. I could not express myself recently and advocate is the word I needed. Words of healing and prayers being uplifted by me on your behalf. Looking forward to your next post.

  4. Pingback: Invisible Illness | kimmiecakeskickslyme

  5. Pingback: The RIGHT Things to Say or Do Around Those With a Chronic Illness | Slices Of Lyme Pie

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