One of the really annoying things about having a job is not having time to blog. Normally I take this balance pretty seriously, but things are a bit manic at the moment and I feel like I’ve barely had time to pay proper attention to this blog. In particular the whole living-life aspect seems to be losing out to ultra amounts of self-reflection. So, as of next week, I’m hoping to have a blogging schedule. (It’s more fun than it sounds, promise.) I plan to have one lifestyle post and one Fibro post coming atcha each week, so please bear with me.
Today, I thought I’d share a short email I wrote for New Life Outlook about how to help others understand your Fibromyalgia. I’ve had a few people message me to ask this. Unfortunately, we still live in a world where Fibromyalgia is not understood and often not believed. I don’t think people realise how much it means to a Fibro patient to hear the words, “I understand.”
With doctors, family, friends and employers misunderstanding our illness, how do we cope?
The best way for people move towards understanding fibromyalgia is for the people living with it to raise fibromyalgia awareness. Talk to those around you, use the word “Fibromyalgia” and make people really understand that it is a recognized, diagnosed condition.
I really need to take my own advice here, because I’m a terrible one for saying “My pain is bad,” or, “I have a condition that means…” But if we don’t name it and shame it, we can’t expect people to recognize the term and really understand what that term means.
We can’t promote all day every day (I mean come on; we’re busy dealing with pain and fatigue here!) so your friends and family are your next best advocates. Encourage them to talk to their friends about it so that we get to a point where the reaction to, “I have Fibromyalgia” is no longer, “What’s that?”
Do Your Research
It’s very easy for us to explain our illness based on our experiences and our pain, but my experience as a fibro patient is likely to be very different to yours, so do your research and find facts that help you explain your condition. This is particularly helpful when you’re dealing with cynical scientists who don’t believe in conditions where there is no clear pathology.
For example, did you know that it’s estimated five million people in the U.S. have Fibromyalgia in comparison to 250,000 to 350,000 with Multiple Sclerosis and 29 million with Diabetes.
You Can’t Win Them All
At some point you will need to accept that you can’t force everyone to understand your condition, and sometimes just seeing that someone is trying to understand should be seen as a win.
You should also focus your efforts in important areas. For example, it’s really important that your partner and/or family understand your condition. You should work together to ensure they know what you’re going through, how they can help and how you can help yourself. It’s not so important that your daughter’s friend’s grandma understands your condition. Pick your battles and focus your attention on those who matter.
Understand Your Condition
It’s one thing knowing the facts but it’s another thing to really understand your condition, and before you can expect others to understand it you need to make sure you do.
One of the most difficult things to get your head around as a fibro patient is that every patient is different. What works for you doesn’t necessarily work for someone else, and you need to understand that before you can expect others to.
Too often I see Fibro patients criticizing other patients’ coping strategies. Rest helps some people, it doesn’t help others. Pain meds help some people, they don’t help everyone. Art therapy gives some people a sense of calm and relaxation, but others find it painful and frustrating.
If you want other people to know what you are going through, you need to gather as much information as you can and learn from other patients’ suffering. Take what you’ve learnt and defend our Fibro community to non-believers… after all, five million voices are better than one.
Oh, and why the cat picture? Because it’s cute, and our cats understand.