I think a lot about all the things that took place between the moment I got sick and now. There is this question I always get stuck on, what would you tell someone newly diagnosed with Fibromyalgia? A part of me wants to give them encouragement and point them in a healthy direction but a bigger part of me screams warnings.
What I know is this; you will be deaf to my warnings until you know, and when you know it's already too late. Illness changes everything and no one can prepare you for just how much, but sadly the people diagnosing you don't even try. Maybe they don't know, or they don't want to scare you, whatever the reason most of us go into this blind and we hack away at our futures and we create these ragged nasty edges we have to smooth out later.
For me those nasty edges were things like career choices, disability and the shame, guilt and bitterness that affected my relationships and myself on a very deep level.
What doctors don't tell you when they give you this diagnosis is that you need to grieve like someone died, because who you used to be did. You have to grieve your old self and then you have to let it go in order to figure out how to survive. You wake up one day and you're not you. You don't think the same way, feel the same way, act the same way.
Everyone changes to a degree, but those changes are generally in bits and pieces, the root usually stays the same. So much changes for us so quickly it can be hard to indentify this new version of yourself as truly belonging to you. And infinitely harder when the people around you refuse to accept it too. Most of the time we don't recognize the power of external forces on our lives. How important our relationships are to the status of our health.
I've always hated putting that much weight on other people, I liked the idea that you are responsible for you, but that's naive I think. Relationships can make or break you when you are dealing with life-changing illness. I've read so many studies showing how people who feel supported recover faster. Before I would have told you it's really up to you, but I know now just how toxic a bad relationship can be. Yes, it has to be you that says -enough, if you can't be here for me and encourage me then get the fuck out of my life. That's all you. The irony is Fibromyalgia has a way of making you feel like you don't deserve anything and those natural survival traits get pushed into a dark corner of your mind, you become a justifier.
Fibromyalgia is steep learning curve, I know there is no way anyone could truly prepare you for everything that will change, but I think it's important not to let people with this condition go on believing they are not changed. That they'll just wake up better, or they can go on doing everything they did before, or that their relationships won't be impacted in a huge way.
I can tell you that before I got sick I never truly felt fatigue, I thought I had.
I never understood true emotional pain.
Acute pain doesn't even register on my radar anymore because I know it's temporary and when you know what chronic pain is you can never compare the two again, no matter how bad the acute pain was.
You learn things about yourself, about other people you might never wish to know, but it changes you all the same.
One of the things that strikes me as the strangest change is how you will sit with people you once considered friends, and you will feel separated by a world of knowledge that you know you'd give back in an instant to feel connected again, but you can't. You're marked, and until they are too they probably won't even give much thought to understanding you, and this will be frustrating even though you'd never wish your pain on anyone.
I think the worst thing you can do is allow other people to make you feel guilty or responsible for those changes. The truly destructive people in your life will do everything they can to remind you that you've changed.