what feedback  do people with chronic illness value the most? 


Lately, I have been seeing a lot of “what not to say to people with chronic illness posts.”while such posts are important, I feel like they give off very negative vibes.:evil:

So I thought that it would be a good idea to do the opposite a “what to say to people with chronic illness”so I asked my awesome Instagram followers and on the facebook groups I am a part of to tell me what feedback they got from their friends, family  and people on social media  told them..to get those postive vibes going 😁

 

” I think the most helpful advice has been actually from many ppl. my GP (general practitioner) said “it’s not your fault that you’re sick you have a lot of health things going on and we’re going to do what we can. hang in there.”



Offer to help and be there for us in our time of need.

“Two of my closest friends requested the following information, “Please explain your emergency protocol to me and show me how to use your epi and glucagon injection in case you need it.” It doesn’t get any better than that.”

We just want you to understand us.Even better, validate us and make us feel taken care of and respected. That makes us feel all warm and fuzzy inside.
“I react very badly to fluorescent light bulbs … and even regular spot bulbs make me hot … when we go out to eat with family, my grandkids check out ceiling lights and scout out the darkest spot for me.
It is really sweet.

They are also SUPER understanding that I have to miss sporting events in heat and sun.
I hate missing but it would be even worse if they made me feel guilty.

The “plus” with flushing is people can see it happening.
My husband now says “we should leave, you’re getting red” … it has been a process but they are starting to understand as best they can.”

Your illness does not make me be there for you less.



“My husband constantly reminding me that no matter how sick I am he will always be here for me.-Margaret R. Lovelace “

My boyfriend saying how proud he is of me and how compared to other people who don’t have the problems I do how amazing I’m doing. I work, go to school etc. everyday’s a struggle but when he says he’s proud of me it’s just makes me feel on top of the world.- Cadi Kocsi

 No matter what,I will be there for you

“When I was really sick my boyfriend would say to me- there is nothing to feel guilty about, you didn’t ask for this! Who would ask for this? It’s out of your control. You’re only job is to go through treatment and as long as you’re doing that- you are being an overachiever as far as I’m concerned. So relax, I love you and I’m not going anywhere. We will get through this together-.Amber Lyn

“That because I’ve been through so much they know no matter what their issue is I am a safe harbor who will listen without judgement and empathise with them.-Amy Lowe Rheaume

Little gifts that show you care

“I was going to go into the hospital for at least a week and my moms coworker put together a gift basket for me of magazines, word cross books, snacks, a blanket, and A TON of other things! Also a nice heavy duty ice chest for me to take with me into admissions. It was the most thoughtful thing I have received in the 6 years I have been sick for ladies who do not know me personally.”-highway to healing

“My sister used the keys she’s got for my house and left me a note in the fridge with a plate of food and a smoothie that her and my nephew had made saying that they just wanted to do something nice for me as I struggle on all the time.”

Use your own challenges to try and relate a little to ours

⚠ do not think you understand the scope of our pain.that’s impossible-unless you happen to live in our body.

“My mum said to me recently when she had to claim ESA as she’s self employed and had an operation on her shoulder, that she didn’t know how I managed to do everything myself as just filling in the forms was a nightmare and she had to get my dad to help her. She said she had so much admiration for me as I just get on with things and I’m doing it all myself.
These 2 things made me cry, as I’m a sap, but also showed me that

my family appreciates how hard life is for me now and also that I should ask for more help as people are very willing to help me. 

Invite us to do things like everyone else,but without pressure



“I’m going to be bridesmaid for one of my best friends next year and we went dress shopping with her sister at the weekend and she organised it so I had a drink, a seat, help with moving the heavy dresses while we were looking at them, then her sister tried our choices on first to narrow them down so I only had 4 to try on. I still needed help and ended up crying in the changing room and my friend came in and gave me a hug, I said that I’d totally understand if she wanted someone else to be part of her wedding party and I’d just be a guest and she said she didn’t care if I walked, scooted, was wheeled down the aisle, or sat at the front with the groom while she came in, I was being part of her wedding and she loved me for putting up with the pain for her ☺️ again made me cry! “-Victoria Bartle

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