Welcome to the CFS rollercoaster.

For months, you’ve struggled with the health system.

You’ve had test after test. You’ve seen doctor after doctor. They have put your body through the ringer and despite how ill you feel, how totally crummy your health seems to be, every single test comes back negative.

According to them, you’re perfectly healthy.

And so one day, you finally get the diagnosis – Chronic Fatigue Syndrome. Myalgic Encephalomyelitis. Fibromyalgia.

And you breath a sigh of relief – “Finally,” you say. All you wanted was an answer, and now you have one. Which is awesome. And you go back to your life, ready to get back to normal.

Except normal is so totally gone. And no one gave you a handbook on what to do next.

So, uh…now what?

Welcome to the CFS rollercoaster.

This is the part where things can get icky. It’s this huge adjustment period and you’ll spend a lot of time feeling like you’re running in circles. This is totally normal.

Your life just went into major upheaval mode. And its going to take some time for you to adjust. However, there are some things you can do to speed up the process.

1. Let yourself cry. A lot. Bawl and bawl and bawl if you need to. Let yourself wallow in self pity for a while, without trying to put your life back together, and without beating yourself up for not being able to deal with this. Crying is dealing with this. And if you’re a guy, and you’re not okay with crying, maybe find something to punch? Not someone (like a doctor). Something.

Your whole life has just been exploded right before your eyes. Crying is normal and healthy. Punching things is normal and healthy. You need to mourn the life that you used to have. Even if you’re still able to create a perfectly awesome, cool new life (which you are), it doesn’t mean that the life you used to have isn’t still gone. It still exploded. You still have to readjust. Whatever great things might still come your way, you can’t repress all that sadness, no matter what people will tell you.

Let it out.

2. Let yourself get angry. Trust me, when you’re done crying, you’re going to be pissed. I’m sure this is the next step in the 5 stages of acceptance, but those steps always annoyed me, so this will be the only time I mention them, unless I’m complaining about them.

Either way, you are going to be angry. Once again, completely and totally normal. Once again, find something to punch. Find something unbreakable to throw. I used to sit in my bedroom, and throw a piece of Tupperware at the wall. It was actually pretty effective – very hard to break, but still made an awesomely loud angry noise when it hit the wall, so I felt like I was breaking things.

I think the anger stage can be hardest for women. Guys are usually okay with anger, not so much with bawling. Women are okay with crying, but most women have been taught that going into a furious rage is bad, and not ladylike, and so we repress it.

With the CFS, don’t even bother. Just get angry. You’ll feel better.

3. Ignore all that junk about not getting stressed out, especially emotionally, because it’ll make you feel more sick.

They never really thought that one through. Because, hey, guess what? You’re chronically ill. I’m  hard pressed to find anything that’s a lot more stressful than that.

Obviously, stressing out over things like, say, the dishes not being done, is probably not the best thing to do, but I would bet dollars to donuts that your stressing over the dishes is just a trigger for those feelings of helplessness and frustration that come with being sick and feeling like you can’t do anything.

So if something is stressing you out, that’s okay. Don’t beat yourself up about the stress, or get all freaked out that you’re going to make yourself super sick. Yes, getting stressed and upset is emotionally exhausting and it might tire you out. But it’s better to do it, get it over with, and then be able to move on with your life, rather than repressing it, attempting to feel nothing and have that source of negativity be a drain on you day after day after day.

4. Start becoming comfortable with talking about being sick and asking for help. This one takes a while longer than the others. The emotions that come up, they’re just sitting there, ready and waiting for you to let them out. This one is something that takes practice, but it’s equally important.

You’re going to have to start becoming comfortable with describing your needs (rest, quiet, massage the upper part of my left calf right now please). You’re also going to have to become okay with asking for help.

I can feel you freaking out as I type that. Yes, I know, asking for help – not something you normally do. But something that is necessary, because you can’t do this on your own. Dealing with a chronic illness like this is big. Bigger than you. Asking for help is the hardest part – I still struggle with it daily. But when I do finally ask, it’s always such a huge relief because I no longer have to struggle along on my own. I would bet any money that your friends and family would be happy to help you out, and would probably feel better.

The people around you are feeling just as helpless as you right now – they love you and don’t want to see you sick. They want to be able to help. So if it makes you feel any better, think of your asking them for help as helping them, by letting them feel good in helping you.

Once you’ve become more comfortable with being sick and with your new situation, then we can start dealing with all the other stuff that’s going to come up – your sense of self, and identity, pacing, and building a life that you still truly love. Because that’s what super important here – learning to interact with this disease on a daily basis, so that you’re the one in control again. It’s about rebuilding your life from the ground up, but building it into something that brings you joy on a daily basis.

It’s about making sure that no matter what, you still have a life.

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