11 Hidden Realities (and 4 Hidden Gifts) of Myalgic Encephalomyelitis

You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks!

1. You will likely grieve, and grieve hard, for the things you have lost. Both the small and the big things. For me, one of those things was working out. When I say working out, I mean the sweaty, hardcore workouts that most people hate. (Yes, I am that person!) Every day I still miss the feeling of strength, power and accomplishment those workouts gave me.


2. Selecting your meal – this has now become a conscious choice. On bad days, I will literally make my selections based on how much chewing is involved. Chewing actually takes quite a bit of energy; more than I may have in the moment.

3. Ice cream is a treasure not to be taken lightly. No chewing and it melts in your mouth. Sometimes it can even perk you up a bit. As long as the cold doesn’t give you the chills for hours after, you are golden!

4. Sippy cups! A blessing! I spill so often now due to my new lack of coordination. Sippy cups with a tight snap shut are great and can even be very fashionable!

5. Resting for extended periods of time is unavoidable on many days. Sadly, the resting may have no meaningful effect on how you feel, but you may not be able to avoid it. Sometimes I even crave it, almost like an addiction. My body lures me into a deep sleep, only to wake feeling like I’ve been hit by a semi-truck, at best. But it can be unavoidable – your body won’t let you escape it and you fear it because you know what awaits you when you wake up.

6. We’ve all second-guessed ourselves when making decisions on little sleep. Imagine the amount of second-guessing you do when it’s been years since you’ve felt rested. (Though I’ve found this to be a fixable issue. Awareness of this issue can eliminate it from being one.)

7. Phone alarms are fabulous. I live on an alarm-based system. If I didn’t set my iPhone for each daily event, I would easily zone out important events or activities.

8. Isolation is hard! Mentally you want to be challenged, to live, to laugh. You crave it. But physically getting off the couch is enough some days. The idea of even initiating a telephone conversation can seem overwhelming and take too much energy.

9. Friends will leave – this can be heartbreaking. It’s an overwhelming, invisible disease. Some people just find leaving easier than figuring out how to be there for the new you.

10. Friends will stay. These are the keepers! Through simple texts or an occasional day out, they help minimize your isolation and increase your socialization.

11. Your symptoms will probably fluctuate. There oftentimes doesn’t seem to be a rhyme or reason for it. The onset can be random and even your own range of symptoms can be random. For me, just when I got used to my own circle of painful symptoms, a new symptom would appear and integrate into the mix.

But… Despite all this you will also gain different perspectives and a new kind of strength.

1. If you can live a relatively good life despite dealing with the daily symptoms of ME, you can survive anything! Anything!

2. Also, certain types of stressors now become minimized or even forgotten (thank you, memory loss!). ME really puts things into perspective. So much of what I stressed about before is a nonevent for me now.

3. You will find new sources of success and enjoyment. It is inevitable that your new “lifestyle” will lead you down new, unexplored paths. Some of those paths may just be your next favorite thing to do!

4. My best advice: Hang in there! While it will get worse some days, there are some days that your new discoveries or accomplishments will really brighten your day. Don’t let yourself miss out on these days by focusing on your symptoms. Truly find ways to be grateful for all the good in your life (even with ME, there still is a lot of good!) and you will find this disease so much more bearable.

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Thinkstock photo via heckmannoleg.

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