Open Letter to Friends and Family
To: Loved ones and friends
From: Warrior with Ankylosing Spondylitis
I cannot speak for all of us but I would like to address things to consider concerning unhelpful and helpful ways to communicate with someone you care about with AS. These are the things many of us wish everyone understood.
Validate our pain
Probably the most important thing we need to hear is that you validate our pain. We understand that you may not be able to empathize and please don’t try! When we hear statements like, “Oh I get back pain too, I just pop a pain pill or push through it. It’s not that bad,” it makes us feel extremely frustrated. These words bury us in our pain and make us want to cover up our hurt rather than invite our loved ones in.
Don't tell us to change our diet
Other unhelpful words are those that try to help, but often make us feel unheard. In good faith, we are told over and over again to change our diet. “Oh, if you’d only cut out gluten, or sugar, maybe go Paleo or vegan and you will be cured.” We know that you see us hurting and want to help generate a solution, but trust me when I say we have done copious research on these topics already.
We have blamed ourselves countless times for that cheat day, sitting too long, standing too long, too much exercise, etc., wondering if that one slip contributed to a month-long flare. Not only that, but many of us have tried countless diets, supplements, and alternative treatments. They may help some symptoms, but they are not cures.
AS does not discriminate
Please remember that AS is not some disease one acquires because of poor life choices. AS does not discriminate. Although it is linked to a gene that some of us are unfortunate enough to be born with, there is also a large percentage of us that do not even carry the gene. We have no warning, there is no exact cause, and it is largely out of our control.
What do those with AS want to hear?
“I’m sorry you are having a bad pain day, although I cannot imagine what you are feeling please know I am here for you.”
“What can I do for you to make your day easier?”
“Would you like me to draw you a bath, get the hot pad, massage you back, make you a cup of tea, etc.?”
“I want you to feel free to vent to me, I am here right now to listen, don’t hold back.”
Some people might also like faith-based encouragement:
“Can I pray for you?”
“God promises to comfort us in our affliction. This life is passing away but His mercies never fail. He will make good on His promise of eternal life.”
“Although I can’t relate, Jesus was not a stranger to suffering. He knows your pain, you can rest in His comfort.”
At least be open to listening
This is my personal perspective but I think it is a great conversation starter. Don’t be afraid to ask your loved one what works for them. If nothing else, be open to listening. Often the presence of someone we care about is worth a thousand words.
Do you use the word disability to describe your AS?