Tips on Communicating about your fibromyalgia
How to talk about your experience of fibromyalgia…
This comes up commonly in sessions.
For example,
- What do I say?
- How much do I share?
- Who shall I tell?
Essentially, you choose.
In the following, I share some tips.
Talking to healthcare professionals
The right healthcare professional to help you is one who specialises in chronic pain and illnesses. They must have knowledge, experience and an approach that makes you feel welcome and safe. Trust is key.
There is no specific therapy or ‘technique’ to help you.
Instead, you learn and practice specific skills and strategies that meet your needs and work towards your aspirations.
This starts with a detailed conversation about you, your life and experiences.
As the healthcare professional, I want a clear picture of you in my mind. You can tell me anything you wish.
It is between us.
There maybe things that are important, especially prior experiences, which you don’t link with your situation now.
The conversation reveals and explains these and their relevance.
Your understanding deepens.
And understanding changes experiences.
Caring conversations are transformative.
So feeling comfortable to talk matters.
This may take time. There can be reasons why you don’t want to open up yet.
Many people I see have had prior experiences of not being heard, or they have been dismissed, not take seriously, especially women. This is the gender pain gap at work and needs urgent change — an aside: my current manuscripts are delving into this to drive such change.
When you have a trusting relationship with your healthcare professional, your work together will be immensely productive.
That work is entirely focused on how you achieve your goals, meaning a range of skills and strategies are necessary. At different times you will need different skills.
And of course, the know-how. That’s the power of coaching. Giving you the know-how to use your skills in the best way, updating them as you move forward.
What if I encounter a healthcare professional who won’t listen or who doesn’t take me seriously?
If you can, see someone else.
You must be heard and taken seriously.
This is your life.
Good healthcare is not telling you what to do. Or one single therapy. Or protocol.
Good healthcare is a collaboration. As I said above, and often say, it is about meeting your ever-changing needs.
Following a programme assumes everyone is the same. This is not personalised.
That is fine if you know what you are getting. Programmes can help in some ways, but they are not personalised if you are following the same route as everyone else.
You need a healthcare professional who puts you and your needs at the forefront of everything you do together and how they prepare you for living yourself better (the skills and your practice).
Appointments
A few tips:
- Think about what you want to achieve in that session — a Pain Coach will ask you or the conversation will reveal what is important that day
- Write down your questions and take them along — all questions are important and must be answered
- Take someone along for an extra pair of ears, but remember it is your session, your time and it must be useful for you
Talking to friends and family
Again, it is up to you what you share.
You will choose what you say to who.
Some people have different scripts. Not word for word, but a level of openness that is pre-set.
This means you can roll out the script that suits you in that moment.
Examples of different levels:
- A detailed update
- The main points
- Brief and then move on
Many people tell me that well-meaning people ask them about their pain.
They were not thinking about their pain until asked…and now it appears.
There is nothing you can do about other people and what they do.
How you relate and respond…that’s your super-power.
It’s a skill.
So you can practice and get better at letting things be.
In fact, the way you respond often guides where the conversation goes next.
If you talk about your successes and how you are facing challenges, people will usually respond in an encouraging way.
This lifts you.
Two insights:
- What you focus on governs how you feel.
- Where your focus goes, your energy flows.
Talking to people at work
The boss
There are different types of boss.
Some you will be able to talk to openly and they will see you as a person and support you as they can.
Others will not.
Often this depends on their level of understanding.
Some people do not feel safe to share their suffering. They believe it will be seen as a weakness and impact on their career.
So it remains hidden.
34% adults in England suffer chronic pain.
In the workforce, many people are suffering.
Yet with understanding work can be a place of purpose and meaning to help the person live themselves better.
If you can talk to your boss and create a way forward together, all the better.
If not, perhaps there is someone else in the organisation you can talk to.
The focus has to be on making it work for you and looking at the different ways this can happen.
colleagues
Similar to family and friends, you will decide how much to share.
People who also suffer or know someone who does, will often show support and empathy.
You may decide to not to tell those who do not.
As I said from the outset, it is your choice.
You must feel in control.
Can you think of someone else you talk to frequently?
More often than anyone else…
.
.
.
Yes! Yourself.
How do you talk to yourself?
We will come to this because it is a key skill.
—
Thank you very much.
See you tomorrow.
r.s.
PS/ do let me know your thoughts about the series so far and any areas you would like me to explore.