Fibromyalgia Action UK

Fibro, family, friends & everyone else - Communication

Fibro, family, friends & everyone else - Communication

Hello fellow members,

A recap in Part 1 we spoke about difficulties about talking to people about living with Fibromyalgia.

Now in part 2 I provide excerpts of articles that may be of interest you about communication, feelings and journey to acceptance.

Firstly before we talk communication we may need to consider the feelings that may be involved as everyone around you digests your diagnosis. It is thought you can apply the Kubler -Ross model to loss of health and people with many debilitating conditions as it seems we all go through stages to acceptance, as we grieve for a former life.

Please see the Kubler-Ross model below;

Five stages of grief - Elisabeth Kübler Ross

EKR stage Interpretation - (Slightly edited to use for Fibro)

1 - Denial Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. It's a defence mechanism and perfectly natural. Some people can become locked in this stage when dealing with a traumatic change that can be ignored.

2 - Anger

Anger can manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them. Knowing this helps keep detached and non-judgemental when experiencing the anger of someone who is very upset.

3 - Bargaining

Traditionally the bargaining stage for people facing death can involve attempting to bargain.. People facing less serious trauma can bargain or seek to negotiate a compromise.

4 - Depression

Also referred to as preparatory grieving. In a way it's the dress rehearsal or the practice run for the 'aftermath' although this stage means different things depending on whom it involves. It's a sort of acceptance with emotional attachment. It's natural to feel sadness and regret, fear, uncertainty, etc. It shows that the person has at least begun to accept the reality.

5 - Acceptance Again this stage definitely varies according to the person's situation, although broadly it is an indication that there is some emotional detachment and objectivity.

(Based on the Grief Cycle model first published in On Death & Dying, Elisabeth Kübler-Ross, 1969. Interpretation by Alan Chapman 2006-2013.)

I may have mentioned this model before as members living with Fibro may go through this journey to get to acceptance - but did you know others around you, may be going through the same process?

You all could be a different stages at any one time - for instance your partner might be still trying to deny it and carry on but you've gone through that stage. Therefore it may be possible for you to be upset by these actions when they could think it's for the best to try to carry on.

Other people around you may also going through this process and have many different feelings so it may be important to talk about their feelings with them. It may be an upsetting conversation and one that people would generally try to put off! But it may help when moving forward.

Communication may be the key

How To Talk About Illness (2014) published by Tamara McClintock Greenberg Psy.D.

An important part of communication is not just talking, but listening to what others have to say. Communication within the family is extremely important because it enables members to express their needs, wants, and concerns to each other.

Open and honest communication creates an atmosphere that allows family members to express their differences as well as love and admiration for one another. It is through communication that family members are able to resolve the unavoidable problems that arise in all families. (McClintock 2014)

Families First-Keys to Successful Family Functioning: Communication (2009) by Rick Peterson, Extension Specialist and Assistant Professor, Department of Human Development, and Stephen Green, Graduate Student, Department of Human Development, Virginia Tech

Keys to Building Effective Family Communication

There are many things that families can do to become more effective communicators and in turn to improve the quality of their relationships. Families can improve their communication skills by following some suggestions for building effective family communication.

Communicate Frequently

One of the most difficult challenges facing families today is finding time to spend together.(please

see article to read more)

With our busy schedules, it is difficult to find sufficient time to spend with one another in meaningful

conversation. It is extremely important for families to make time to communicate. (please see

article to read more)

Communicate Clearly and Directly

Healthy families communicate their thoughts and feelings in a clear and direct manner. This is

especially important when attempting to resolve problems that arise between family members

(please see article to read more)

Be An Active Listener

An essential aspect of effective communication is listening to what others are saying. Being an active

listener involves trying your best to understand the point of view of the other person. (please see

article to read more)

Be honest

In order for effective communication to take place within families, individual family members

must be open and honest with one another. This openness and honesty will set the stage for

trusting relationships.Not all family members communicate in the same manner or at the same

level. (please see article to read more)

Pay attention to non-verbal clues

In addition to carefully listening to what is being said, effective communicators also pay close

attention to the non-verbal behaviors of other family members.(please see article to read


Be Positive

While it is often necessary to address problems between family members, or to

deal with negative situations, effective communication is primarily positive.

(please see article to read more) (Peterson et al 2009)

If you are experiencing difficulties explaining your condition and experiencing lack of understand from family and/or friends. You would maybe like to consider finding time to talk in a quiet environment and possibly agree some ground rules about who talks when etc. Isn't there a 'Talking Stick' that can be used to pass around - you might like to try this. Thinking about what you want to say, having the information ready and writing down key points might help. Also please check out articles on Part 1 as they may be of interest also.

This you tube clip about living with Chronic Pain may also help in this post below;

Of course there are organisations which may be able to offer help like Relate, Family Lives etc - all resources listed below. It may also be useful to talk to your GP how it is affecting our family life, s/he may suggest other local support.

Check out our website for our Fibro Support Group listings;


Also I think maybe being honest with yourself (if you haven't done so already) may be something to think about. Do you need further help to adjust to living with Fibro? (counselling etc) Do you need your medication reviewed as it is not controlling your pain relief Are you low in mood? therefore may need to see the GP about something to help.

I sincerely hope a little bit of information here may help you to consider talking with your family and friends, hopefully to encourage understanding and therefore may make an improvement in your relationships & less stress affecting Fibro. It make take time but I hope it turns out OK for you.

Please Note: This is written without my FibroAction hat on, just to provide any articles with good information that may help (note not research articles)

Keep any eye out for Part 3 & 4

Emma :)

FibroAction Administrator


Part 3 - Fibro & everyone else - Awareness & how you can explain (if you want to that is)

Part 4 - Fibro & Toxic Relationships



0300 100 1234

Family Lives

0808 800 2222


08457 90 90 90

Carers Trust

3 Replies

Reminds me of SARAH - Sadness,Anger,Rejection,Acceptance,Hope pathway


Thank you Emma, really interesting.

Take care

Ken x x


I've pretty much gone through the relevant pointers for me and family....but its always a good thing to re-read and evaluate your feelings! Thanks for the information mdaisy!...much

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