After all, there is nothing that can be done to cure it - hence the name chronic - yet I spent the first year of my diagnosis frustrated at everyone around me for not helping me....when really I wasn't helping myself.
My main and most important point for all those people within close proximity of a Spoonie (person with chronic illness); Educate yourself.
I don't often tell people my symptoms or anything about my chronic illness because I don't like to be "that person" who moans about something that is wrong with them. However, I cannot tell you how extremely happy it makes me when the people around me acknowledge that my chronic illness...even more so when they tell me they looked it up or ask to know more about it.
For example, a ex partner often turned to me and said "Don't worry, I'll do that, I know it'll hurt you" It made me so happy and is something he probably wouldn't have thought twice about at the time. I rarely mention my pain levels to partners. My mum will ask if i am low on spoons and I have friends that will clock when I am flagging and tell me it's okay to leave a social event.
I am an active person and I have Hypermobile Ehlers Danlos Syndrome. My body doesn't produce enough collagen, making me deficient. Collagen is like the scaffolding of the body, it's the connective tissue that helps keep everything together. With less that normal collagen, my joints are prone to dislocations, subluxations and inflammation, as well as being flexible. My body works in a way that my ligaments are easily stretched causing Delayed Onset Muscle Soreness over a lot less exercise than a healthy person as the muscles work twice as hard as they are holding everything together.
How have doctors told me I can treat this? Exercise...confusing right? Well strengthening the muscles surrounding your joints will take the stress off of ligaments. However, I would need the time to work,exercise and rest enough for the muscles to be able to repair themselves and build...unfortunately, faulty collagen means longer rest time is needed and that's just not feasible with a full time job...so I do what I can and accept what I cannot. Working hard now will mean I can work part time in the future and in turn become physically healthier.
That's why it's so important for the people around me and anyone with a chronic illness of any type to understand. I'm not the type of person to give up and a lot of other people have the same mindset. Every single day is hard and no two days are the same. One day I'll wake up and be fine because the day before I would have done less to effect my body and the next I'll wake up with sore and throbbing joints because the day before I might have gone for a walk or travelled to a meeting and I'd take for granted the effect it'll have the next day. After all, if I feel fine at the time, it's hard to recognise when I'm doing something that will have an effect on my chronic pain in the future..I talk about my circumstances because I know that I am not alone in this too.
To have someone recognise when I'm struggling or ask if I am and tell me it's okay to slow down or take a rest or to have a nap...is super important.
If you are someone on the outside, don't beat yourself up about not being able to help take the pain away. The smallest actions really do mean the most.