I've talked a lot about some of the unhelpful and insensitive things people can often say to you when you're unwell, but today I want to talk about something slightly different. There are people who really care about you, want to help, and try to understand, but it's still frustrating trying to get them on the same page when they aren't experiencing the same things as you. What can you do about this?
The first thing I want to say is communication. If someone doesn't understand something, explain it. Explain to them, in as much detail as your comfortable, why you can't do a certain activity, or why stopping all your medication and going vegan or starting yoga won't magically cure you. People can only understand if they have all the information. Another important thing is to speak up if someone unconsciously says something you find offensive, tell them why it's offensive to you, and why your disability has such a large impact on your life.
When people ask, what can I do to help, the natural instinct is sometimes to feel frustrated, to tell them there's nothing they can do, and that you will never get better. While it is true that you may not get better, try not to assume there is nothing others can do to help. Think about some of the things that help you when you have a flare up, such as a heat pack or gastrolyte, and let people know about these. The Pillow Fort UK has a great resource for helping others know how to help based on which symptoms are playing up. You can find that here along with the blog detailing a bit of background information. If you live with others, such as your family or flatmates, this can be a great way to tell them what will help you in advance so that you don't have to try and figure it out while you're in pain and grumpy. (you do have to subscribe to get the printable, but there is an example there, so you could easily make your own).
How can others help you when you're flaring? How do you explain your illness to others? Does this work, or do you still feel like the don't "get it"?