ME/CFS/FM: Dealing With People Who Don’t Understand

Hypnotherapist and former sufferer of ME/CFS and fibromyalgia explores why trying to explain the condition to others can be challenging, and strategies for dealing with people who just can’t seem to understand these conditions.

I was ill with ME/chronic fatigue syndrome and fibromyalgia for 8 years. It took me a long time before I realised that I was spending a lot of energy trying to get people to understand what it was like to have this condition- without success. I now realise that some people were thinking in illogical ways, for instance they would say to me and others:

• “You are depressed.” I may have been feeling down as a result of the condition; who wouldn’t? But I knew that depression wasn’t the cause of my health issues. I was dragging myself out of bed every morning to do yoga when I could. I had changed my diet in an attempt to help improve my health, including juicing regularly. This wasn’t the behavior of a depressed person!
• “It’s all in your mind.”
• “You just need to do more exercise.”
• “You want to retreat from life.” I had led a busy, active, social life, playing football and tennis, partying. Why would I want to lie in bed all day?
• “You need to drink more coffee, lucozade, or put more sugar in your tea.”
• “We all get tired.” I knew what normal tiredness was like!
• “You are lazy/malingering/feeling sorry for yourself.”
• “I wish I didn’t have to go to work/could lie around all day/could have time off to smell the roses.”

You have probably heard all of these and more.

This raises 3 questions, which I will deal with in turn:

1. Why do people do this?
2. Why do we try to explain others what we are going through?

3. How can we deal with these kind of comments?

 

1. Why do people do this?

Some People Behave Unkindly
Some people (hopefully a minority) want to be hurtful. There may be any number of reasons why people want to do this, but consider the following:

Is this the behaviour of a happy, contented person who is having a great life? No! People who are happy don’t need to go round putting other people down.

There is often a low self esteem issue here: I discuss this in more detail in my free ‘Six Steps To High Self Esteem’. Email me for a copy (I won’t put you on a list, or share your email). I will add it to the Downloads section in the next few days. (25.04.16)

They Feel Uncomfortable
Again there may be any number of reasons for this. Illness can remind people of their own vulnerability.

I remember meeting a man who had been affected by the thalidomide drug, and had a deformed hand. I felt uncomfortable, I realized it was because it reminded me that we are all vulnerable: anyone could be injured in a car accident, and be left with a similar injury, and then have to deal with other people’s judgements of them.

They Are Not Thinking!
When people feel uncomfortable, they can end up saying things without thinking them through. They might be trying to play things down, or think that they are helping in some way. Or they can become judgemental, which is one way of dealing with those uncomfortable feelings.

Lack Of Understanding
They have a limited understanding of the condition. They just can’t understand a condition that they cannot see. Some may doubt that you are ill.

To be fair, when friends of mine had CFS, I didn’t really understand what they were going though until I had it myself. It can be challenging for others to empathise.

2. Why do we try to explain?

It is understandable that we try to explain to others what it is like having ME/CFS or fibromyalgia, for a number of reasons including:

1. You want them to understand
2. You are trying to make sense of what’s happening to you
3. You hope that they might say something helpful or be able to shed some light about dealing with this condition.

There are people who want to try and understand, and it is reasonable to do what you can to help these people develop insight into what you are going through, so that they can consider how best to help you.

But there are others who will not understand, or don’t want to understand what you are going through. No matter how much you try and explain, or to convince them that your issues are real, they just don’t seem to get it.

3. How Can We Deal With These Kind Of Comments?

It may be vital for your own state of mind that you consider the following strategies:

1.  Tell Them How You Feel
Saying I feel hurt when you say that may work in some situations, for instance, if the person does care for you. If the person is enjoying saying hurtful things, then saying “I feel hurt” may please them, so this might not be the best approach.

2.  Name The Game
Recognise that they are playing a game, which is “I want to be hurtful”. Saying “Are you trying to be hurtful?” can disarm them. Letting them know that you can see they are trying to be hurtful can help you avoid getting caught up in the game that they are playing.

If they persist with that unpleasant behavior, try this strategy, suggested by a client: “When people are trying to be hurtful, my sister will simply say to them “Be nice”. If they carry on saying unpleasant things, she will just keep repeating those two words.”  She says the person usually backs down, as they realise that they are not being nice!

You may try a combination of these approaches.

3. Formulate A Simple Explanation
If you really want to explain this condition, develop a stock response that is simple to understand, short and sweet. You may want to include some of the following:

This condition is real, it’s not all in my mind
This is not normal tiredness, I know what normal tiredness feels like
I want to be well
ME/CFS is like having constant flu, a hangover & weights tied to your arms and legs

4. Acceptance
Learn to accept that it is very difficult for some people to understand what you are going through. Accept that it is possible that nothing you say will make any difference to some people. Let go of this goal to ‘try and get others to understand’.

When I was ill, I decided to stop trying to explain the condition to a family member. I had tried and tried, and this person just didn’t get it.

One day I said to this person “I’m not going to continue trying to explain this condition to you. If you want to know more, I can give you some resources. From now on, I am going to put my energy into what I think will help me. If you have any ideas, I will consider them, and whether I explore them further is my decision”.

I felt more relaxed from this point on.

5. Practice Self Acceptance
There are probably times when you don’t take much notice of what people think; you are clear enough about what matters to you, that the opinions of others are not important to you.

So imagine someone saying to you that you have green hair. You wouldn’t take much notice; you would think they are being absurd. Now imagine someone saying to you “This condition isn’t real” and feel how it feels to respond in the same way, thinking to yourself “They are talking nonsense. I don’t need to explain myself to this person”. Imagine just looking at them as if they were a bit strange, and walking away.

It may be better for you to focus on feeling ok about yourself as a person with ME, so that the opinions of others is less important to you.

The more you are able to be at peace with the fact that for now, you have the condition, that you are doing your best to deal with it and make improvements, the more you will be able to let go of the views of others as being important.

6.  Change The Topic

If someone makes daft comments and you don’t feel like challenging them:

Ignore their comment
Change the topic

7. Change Your Focus

Feeling frustrated, cross, upset by other people’s lack of understanding is understandable, but if you have read my report ‘ME/CFS Essential Information You Need To Know’, you will know how this could be hampering your recovery. So it is really vital that you direct your energy on you and your healing.

You can access the free report here

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  SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress. After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years. He discovered a pioneering approach to resolving health issues and quickly got back his health, and now trains others using these same techniques, to help them become happier, healthier and achieve their goals.