ME/CFS: 12 Steps For Setting Boundaries

Where Is Your Line In The Sand?

Setting boundaries is essential for everyone, especially for many people:

• With ME/CFS
• Recovering from ME
• Experiencing a relapse/illness

This may involve setting boundaries with others, but also with oneself.

Although doing so may cause some discomfort in the short term, I believe that getting clear about boundaries will be good for your wellbeing in the long term;

• What you can manage currently
• What you need to say no to
• What behaviours you are willing to tolerate

We have to know where the line in the sand is- to be able to recognise:

• Where your boundaries are
• When someone has crossed a line
• When we have violated our own boundaries

So if I value my health, it is useful to recognise when my behaviours, or the behaviours of others have not supported my health and wellbeing.

Whilst some people with ME/CFS find this easy, many people are, by their own admission, not good at this.

Why is setting boundaries difficult?
Reasons include:

1 We don’t want to upset others
2 We fear rejection
3 We don’t want to miss out on the fun
4 We don’t want to be a seen to be ‘weak’
5 It’s a learned behaviour
6 We are a ‘helper’

Are there any other reasons you have?

12 Steps For Setting Boundaries

1 Check In With Yourself
How are you feeling physically, on a scale of 1-10 with 1 feeling extremely poorly and 10 feeling in good health?

So for example, if you’re a 3, then recognise that it’s going to be important to set boundaries today if you want to feel better tomorrow.

Also, notice how you feel around others.

Are there people who drain you, or you notice that you feel uncomfortable/tense/resentful around these people.

These feelings may indicate that there may be boundary issues with these people.

Consider the reasons for this.

2 Identify Your Needs
Get clear on what you need.

It might be some human contact, a bit if fun, some time out to recharge.

3 Find Ways Of Meeting Your Needs
Do what you can to meet your needs.

For example, if you want some human contact, and can manage this, you may decide to have a conversation or send time with someone.

If you want a bit of stimulation,  you might decide to watch something on TV.

Ensure that you don’t get too overstimulated if you are feeling poorly.

I recall when I had ME/CFS, sometimes spending time with people was tiring, as I would get animated!

4 Use A Timer
If you feel that you haven’t been getting as much human contact/fun/stimulation as you want, it is easy to get carried away.

It is all too easy to do something for too long, get over tired and then pay for it.

If you are feeling particularly fragile, use a timer to set time limits.

Set a realistic time and stick to it.

This requires patience!

What can help is to tell yourself that this lack of energy is temporary.

This can be challenging, especially if you have been unwell for a prolonged time.

However, managing yourself will help conserve energy and help your body heal.

Remember that in each moment we can take small steps towards or away from health.

Make sure that you are taking steps in the right direction.

5 Identify Your Values And Standards
In relation to others, get clear on what behaviours and treatment you will tolerate from others, and what you won’t.

Many people tolerate treatment from others that they would find unacceptable if they themselves behaved in this way towards others.

Two personal examples:

i. I used to overlook certain behaviours towards me from someone in my circle.

For example, if I challenged them on their behaviour that I found unacceptable, they would tell me it was my issue and had nothing to do with them.

I decided that if they cannot behave in a respectful way, and are not able to acknowledge and alter their behaviour, then I don’t want to have a meaningful relationship with them.

ii. I used to have two friends.

[I have other friends! :-)]

If I say to one of them “I need to go home now.” she always responds by saying “Ok. Bye.” and gives me a hug.

No drama.

The other would always say “Stay. Why are you going?” and make a fuss.

Whilst it is nice to be wanted, actually, she wasn’t really thinking about me.

She was only thinking about herself.

This self-centredness showed up in other ways.

Now I only consider one of these women a friend…

6 Communicate Your Feelings
Knowing how to communicate assertively is a big topic!

I teach assertive communication.

In brief, being able to say “I am shocked/surprised by/feel uncomfortable about your behaviour.” lets the other person know that you have standards.

If you feel uncomfortable about challenging others, it can be a sign that you are not used to setting boundaries.

You can learn.

Be willing to develop this skill.

Being honest and truthful with others is important.

Asserting yourself is good for your health and wellbeing and ultimately is good for others.

We don’t help others grow and become better people by putting up with their nonsense.

Of course, we have to consider how and when to do it; face to face, on the phone, by letter or email.

For some people, face to face may be too difficult to hear, whereas receiving a letter/email may be a bit easier to absorb.

Also, you have to choose which issues to address, which to let go, for whatever reason.

It gets easier the more you do it.

A starting point is to accept that your feelings are valid.

Also, avoid getting into a discussion about your feelings.

7 Practice Saying No!
If you feel that you can not fulfil a request, then say no.

No is a complete sentence!

Be firm.

Make sure your ‘no’ is a no, not a maybe.

 

8 Pre-empt The Situation
Telling people in advance that you may have to say no to things at the moment because your energy fluctuates, can save the discomfort of having to explain each time you say no.

If they look puzzled or question why you are having to stop an activity, gently remind them that you have already explained the reason why you are having to take care of yourself, and leave it at that.

9 Consider That You Don’t Have To Explain
A Psychologist I was seeing for cognitive behavioural therapy when I had ME/CFS once said to me:

“No apologies, no explanations.”

He was advocating that you don’t have to give explanations, or justify your actions.

If you are one of those people who apologises frequently, resist the temptation.

10 Stop Second Guessing How People Will React
Someone once told me that there are 3 kinds of business:
Your business
My Business
‘Other business’; Neither your or my business

So for example if I come to meet you for a cup of tea and after a while you feel tired, and feel that you need to rest, that is your business.

Whatever I feel is my business, and it’s for me to deal with.

If I feel upset, disappointed, they are my feelings.

Sure, you might feel frustrated, uncomfortable that you are having to cut things short, especially if you feel you have had to do this with this person before, but you have to remind yourself that doing this will aid your recovery (point 11).

And if you keep allowing yourself to get depleted, it will take longer for your body to recover.

11 Find Balance
Some people give.
Some people take.
Some people give and take.

Which are you?

I suspect a lot of people with ME/CFS are givers/helpers.

Is there room for a more balanced approach?

12 Prioritise Yourself
You are on a mission of self care.

It’s an important mission.

Remember what they say on aeroplanes.

You have to put your own oxygen mask on first! (Thanks Sarah for that reminder).

Wishing you good health!

Simon

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If you haven’t read it yet, I would invite you to. It’s not a long read, around 15 minutes or so.

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