What we want friends and loved ones to know. (#disability #chronicillness #pain #autoimmune)

Thank you to all those who have stood by us!
Thank you to all those who have stood by us!

If you are a friend or loved one of someone who has a chronic disease, disability, chronic illness etc
Here is what we would like you to know…

Firstly, you are truly rare!!! Most people don’t stick around and so you are amazing for your empathy and spirit.
Secondly, you mean more than you will ever know because it is through you that we remember our former selves and the memories of yesterday and the hope of tomorrow.
Thirdly, it kills us to let you down or say no when you want something or want us to go somewhere. Our bodies and hearts are at constant war and we feel so low when you get hurt in the crossfire.
Fourthly, we don’t want you to feel sorry for us. We want you to still see all the good stuff you saw once and see us for who we are inside. We want to feel valuable and not pitied.
Fifthly, we love hearing about your lives, jobs, children and holidays. Sometimes we wish it were us too but we never want you to feel guilty or not enjoy any second of your time and journey.
Sixthly, we aren’t just sitting in a bed, in the dark, crying and moaning. We have an life an a reality but it is very different from what most people will know unless it happens to you. We try very hard to find pieces of life too.

Finally, we want, hope, try, believe, wait, desire a cure more than anything… That’s why we will take any medicine, drink anything, exercise when/ if we can, hurt ourselves trying. There isn’t a thing we haven’t tried or wouldn’t try just to feel “normal again”.
And we love you more than you will ever know or more than we can put into words.

– love

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