To the Person Newly Diagnosed with ME/CFS

It may seem like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has robbed you of the satisfying life you once had. But don’t despair! Life has changed, but it isn’t over. And there is hope. Managing the illness well can lead to improvements. Good management can be challenging, though, so it can be your primary goal for the time being. Like me, most people learn through lots of trial and error and make lots of mistakes, so I’d like to share the most important three things I learned about coming to terms with living with ME/CFS.

1. Allow yourself to grieve.

Good illness management only really happens once we accept that life has to be lived differently for a while. Recovery is rarely quick, and holding onto pre-illness aims only gets in the way of the adaptations needed in order to give the body the best chance to overcome this illness. We need to allow our feelings of sadness and anger over what we have lost to flow. When we accept those feelings as a natural part of coming to terms with the illness and allow them to be free, we may reach an acceptance of the illness. This acceptance isn’t resignation. Positive acceptance recognizes there are many ways I can learn to adapt, many things I can do to give my health a better chance, and many new happiness skills I can learn to replace the things that made me happy in the past. Grieve what you have lost, then remind yourself that a different life can still be a good one.

2. Don’t fight the illness… outsmart it!

When faced with devastating adversity, often our first impulse is to fight. Many of us think if we fight this illness hard enough, we will overcome it. So each day we push ourselves to be a little better than the day before. Unfortunately, ME/CFS doesn’t work like that. My first six months of this illness I fought and I pushed, and I got worse and worse until I grieved, accepted and learned to listen to my body.

Instead of fighting, I can outsmart the illness. By understanding the illness mechanisms, I can work towards helping my body tackle them. The most important thing to understand is the “energy envelope.” Each day we only have a certain amount of energy available to us and that amount can seem to mysteriously change from day today. I can learn to recognize how much energy I have and make sure I don’t use it all up, and save some to use for healing. If I use all my energy or try to use more than I have, it takes my body too long to recharge and I crash.

To avoid a crash, I can learn to recognize when I’m having a lower-than-normal energy day, and recognize how things like stress and infections can take away a big chunk of that energy and cut back accordingly. It’s a difficult learning curve, but all that determination to fight can be redirected towards the aim of outsmarting the illness. One of the most helpful pieces of advice that I ever heard from a doctor was to do everything at only 50 percent effort. Staying relaxed and not pushing is one of the best ways of keeping within my energy envelope.

3. Keep hopeful of better health, but don’t put your life on hold until you get there.

Learning to cope with ME/CFS takes time and attention. Hope for a better future will motivate us to take the kind of care we need to take with our bodies. However, when we lose all the things that used to make us happy, we need to replace them. If I hang around and wait until I am better to enjoy life, I’ll soon lose motivation because the rewards can be slow in coming and I will encounter many challenges along the way. And hanging on to wanting the things I can only have when I’m better will make me impatient and spur me to push beyond my energy envelope, leading to the boom and bust cycle that prolongs the illness.

We can learn new ways of being happy that are possible within our new restricted limits. We can find ways of making rest pleasurable. We can find other ways of expressing ourselves and being creative that fit with the new way the illness constrains us. We can rise to the challenge of living life for today in a totally different way! Can you meet that challenge?

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.