I am a little late on this one! Fibro Awareness Day was May 12th, and here I am half a week later putting up a post about it.
I was diagnosed with fibro a few years ago now. It was completely unexpected, though looking back I can see those symptoms. It’s not my only chronic illness, but it is one that effects me on a daily, draining basis.
What is fibro?
To be brief, we don’t really know exactly what it is. From the most recent research, it seems to be related to nerves and the sending of pain messages. My rheumatologist believes that for me, it was caused by years of childhood trauma that I was never really properly treated for and while there is some research that supports this we still don’t know for sure. What we do know is that it involves constant pain, high reactions to pressure (particularly on the dozen or so trigger points).
What is fibro like?
For me, it’s exhausting. My other chronic illnesses can be more debilitating, but fibro is constantly there. There is no such thing as being comfortable, just in more pain or less pain. If my partner hugs me too tightly it hurts. I have two lovely children who enjoy playfighting – something my partner does with them and they know I just can’t do. At times I have to prioritise which pain or issue to treat. Do I find some way of putting deep pressure on my sore back, or leave it because that will intensify the fibro pain? Do I rest so I can manage fibro, or move so I can manage hypermobility?
But there are things that are worse than pain and constant tiredeness. It seems to be pretty common that when you’re diagnosed with a chronic illness that you lose a bunch of the people who were once an important part of your life. My symptoms meant saying no a lot more, or if I said yes needing to have accommodations – which meant I was a drama queen, attention seeking, a hypochondriac. Some people just stopped inviting me. Others I couldn’t be bothered dealing with. In the nearly 8 years since the symptoms started I have had to build my support network almost from scratch.
If you’ve just been diagnosed
This is just the next step for you. It’s information that will be able to help you. Even if you don’t have access to proper treatment you can still learn from others with fibro what does and doesn’t work for them.
If you care about someone with fibro
Please believe them. Trust that they know their limits. Invite them to things – even when you know the answer is going to be no. Try to make things accessible and ask them what that looks like for them. For me, things like not having to go up many stairs and having a seat are necessities no matter the occasion. Just… listen, and don’t forget them.
Ruby the Chronic 