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How to Cope When Others Don’t Understand ME/CFS

In my 10 years of chronic illness, one of the most painful things to deal with was the reaction of other people to what I was going through and trying to communicate my experiences to them. It was crushing to witness how my relationship with many of the people around me was changing as I dealt with an ME/CFS  (myalgic encephalomyelitis/chronic fatigue syndrome) diagnosis [1], and how we used to be wasn’t how we were now.

It’s natural to feel sad, frustrated and angry when we’re so unwell. As so often happens when we’re feeling a little lost, we desperately want others to know what it’s really like to go through what we’re going through, and it’s usually those closest to us who bear the brunt of our frustrations.

My years of experiencing chronic illness and being disheartened that I couldn’t connect with people in the way I wanted to taught me some valuable lessons. Coping with ME/CFS isn’t easy — here are some ways to get through it when others don’t understand:

Coping with ME/CFS

1. Recognize that people can’t truly understand what you’re going through.

If your family and friends haven’t been through the exact experience you’re going through at the moment, they’re not going to be able to understand what it feels like living with a chronic illness day in, day out. We might scream and shout at them when they seem totally ignorant of what’s happening with us, but when I was sick, I had no idea what was really happening to me either. It follows then, that getting others outside of you to fully understand what’s going on when you’re struggling to comprehend everything yourself is going to be difficult.

At the end of the day, even if our relatives or friends have a funny way of showing it, they’re just doing their best with the information they have at the time — just like we are. To see both sides of the situation, it’s useful to imagine things from their perspective, however, this may only come with patience and when brain fog allows it.

2. You might have to let some people go from your life.

One of the most upsetting parts of enduring ME/CFS symptoms was suddenly realizing that some of my friends were slipping away from me. I had to drop out of university in my first semester because I was so sick, and I couldn’t help but be angry at myself that I was in this position. Most of my friends were probably having a great time at university, meeting new friends and getting on with their lives, but if anything, I’d gone backwards.

My friends would ask if I could meet them, to which I’d always say ‘yes’, but I knew that there was no way I would be able to see them when I couldn’t get out of bed. I always had to text at the last minute and say I couldn’t meet them. I didn’t give any explanation (I was still very ashamed of being ill), but I felt so small every time I let one of them down.

That’s when I realized that I just had to let the nature of my relationship with them change or even let some of them go. Accepting this didn’t mean I was completely fine with it, but it made focusing on healing a lot easier.

3. Focus all of your energies on healing.

The more energy [2] I burned up in getting angry or frustrated with others, the less energy I seemed to have for myself. Although this seems obvious now, my brain fog [3] and muscle pain [4] was so bad at the time that I couldn’t see how much I was depleting myself. Coincidentally, my symptoms always worsened when I was tense, agitated or upset, and it made any relapses or hiccups along the way all the more difficult to cope with.

Try to drop some of your frustrations with others and focus more on yourself,  your ME/CFS treatments, and the road to recovery. Gradually, you might notice a change in your energy levels.

4. Know that you are not alone.

I know that crippling sensation and emotion that comes with feeling as though you’ll never get through the devastation of a chronic health condition;  you can feel like you’re totally alone, but know that you’re never truly by yourself.

If you don’t feel able to reach out to your family and friends just yet, there are some incredible online ME/CFS communities. There is so much comfort in knowing that you are understood, seen, and that someone feels exactly the same emotions as you. Keep reaching out as much as you can, even when you’re feeling uneasy and vulnerable.

It is frustrating when others don’t understand what it’s like for those of us with ME/CFS, but just taking it day-by-day and using some of the ideas above could really help improve your relationships with others.

This article was first published on ProHealth.com on July 31, 2015 and was updated on August 21, 2019.

Katie Manning is a teacher, mentor, speaker, and writer, and the creator of the blog, Conquering Fear Spiritually [5]. The blog documents the steps she took to completely heal herself of a 10-year illness with ME/CFS. After being free of the illness for over five years and in the best health of her life, Katie inspires others to step into their own healing journey and live healthy, peaceful lives, free from chronic illness. Connect with Katie:

Conquering Fear Spiritually [6]

YouTube [7]

Pinterest  [8]

Soundcloud [9]