Download Effective Communication Strategies for Carers factsheet

Building a successful caring partnership relies on clear and frequent communication to understand the needs and boundaries of both the person you provide care for and yourself.

This page has been designed to support you to better understand your own communication styles as well as that of a person living with ME/CFS, to support a strong caring relationship.


Understanding communication styles

Identifying your own unique communication style as a carer enables you to respond more effectively to the needs of the person living with ME/CFS.

Communication can include combinations of the following styles:

  • Passive communicators tend to defer to others for decision making to avoid confrontation or conflict. It can appear very ‘easy-going’ and accommodating, but this style may cause built-up resentment as the carer’s own feelings and needs are not addressed.
  • Aggressive communicators tend to express their needs and wishes at the expense of others. They may respond defensively or with hostility when challenged. This can alienate or ‘shut down’ others, whose needs may go unacknowledged.
  • Assertive communicators express themselves respectfully whilst balancing their own needs and wishes with the needs and wishes of others. They share direct and honest communication of thoughts and feelings and allow for possible differing thoughts and feelings of others.

Build strong caring relationships through positive communication 

The person living with ME/CFS may have a reduced energy limits, so here are some tips that will help you to maximise your communication with them:

  • choose a moment when you are both able to fully engage with one another
  • establish ‘soft’ eye contact and an open body position
  • be curious, and ask clarifying questions to enhance your understanding i.e. “tell me more about that…”, “what did that feel like for you?”
  • Validate their thoughts and feelings by expressing empathy (imagine what it must be like to ‘walk in their shoes’ right now)
  • choose “I” statements to explain your point of view, i.e. “I feel...when…because…and what I need is…”
  • briefly summarise what the person has said i.e. “what I heard you say was…”; this helps them feel seen and heard

Check in with yourself

Know your own limits and learn how to respectfully express when your views differ from theirs. Self-soothe if you become overwhelmed, (see techniques below) and monitor when you need to take a break.


Setting boundaries 

Boundaries help you to maximise your own emotional energy and remain true to your feelings.

When setting boundaries, ask yourself:

  1. What are my reasonable rights in this situation? For example, the right to be treated with respect, to say “no”, to negotiate with your needs in mind, to parent or partner in the most effective way you can, to change your mind or not accept the unreasonable expectations of others.
  2. What is my gut feeling? Am I feeling a negative physical response right now? This will indicate to you when a boundary needs to be created or reinforced.
  3. What are my values? What is most important to me? Is this situation or decision working against my values, and how can I express this clearly?

Noticing the verbal or non-verbal cues of the person you provide care for helps you to identify their boundaries. If they look uncomfortable or disengaged, check in with gentle empathy to enhance your understanding of their unique boundaries.


Building a successful caring partnership

Speak often

Develop a communication frequency that works for both you and the person you provide care for. Focus on the most important aspects first. Allow for conversations being cut short depending on their energy levels and prepare concise messages in advance to ensure you don’t overwhelm them.

Identify the best way to communicate

Consult with them on how to best communicate with one another. Examples may be writing notes or sending text messages, using a signalling system when your person needs something (such as a bell ring or buzzer), or using scaling responses (for instance, “how are you feeling today on a scale of 1-10?”).

This will help the person you provide care for to communicate when their fatigue levels and/or brain fog don’t allow for more extended verbal exchanges.

Include your person in decision-making

Wherever possible, include the person you provide care for living with ME/CFS in family discussions, decision-making and sharing significant news. Always encourage them to consider the available information and have discussions on/provide input into decisions affecting them.

Expressing appreciation

Regularly acknowledge your appreciation for them using ‘person-centred’ communication. This involves respecting their unique thoughts and feelings, expressing interest in their hobbies, skills and passions, and maintaining light-heartedness using playfulness and humour.


Giving and receiving appropriate feedback

Introduce two-way feedback to encourage positive growth in your caring relationship. Ask the person you provide care for:
  • "How am I doing?" on a regular basis and listen for ways in which you can adapt your approach or care
  • "Can I give you some feedback?" on a regular basis to enhance their understanding of how to best acknowledge and work with you. Use “I” statements and thank them for taking any feedback onboard.
Ensure that you bracket any negative feedback with positive statements, for example “I really appreciate your text messages, however the tone can sometimes make me feel unappreciated, I would love a simple hug or even a hand squeeze more often”.

Problem solving communication breakdowns

Sometimes communication can break down when emotions escalate. Feelings such as frustration, and overwhelm can harm communication and cost you both unnecessary time and energy.

  • Focus initially on calming your heightened emotions. ‘Cool down’ by stepping away, drinking some water, doing breathing techniques, moving your body and/or listening to a song or two.
  • Return to the conversation when you both feel calmer. Reinforce your fondness for the person you provide care for and express a desire to come to an understanding.
  • Use the techniques outlined on this page to actively listen, summarise with empathy and concisely outline your own thoughts and feelings, even if they differ with those of the person you are providing care for.

Disagreements or misunderstandings can be cleared up and the relationship strengthened as you each learn more about how to meet each other’s needs.