Explaining your pain: A how to guide

Module 2: Explaining your pain

In my previous post called ‘Taking Back Control of my Pain’, I discussed how I am currently trialling The Leva Clinic’s Pain Management Programme. I am now on Module 2 and, as I explained in the first post, I am going to be detailing my experience with each module and sharing with you my findings and helpful things I come across.

This second module is all about how we talk about pain, explaining your pain to others and involving others in your pain journey. Others could include your health care provider, physiotherapist, community, groups, family, friends and partners because it takes a village to live with a chronic illness.

Explaining your pain to your community

As I am sure you are aware, living with a chronic illness can cause isolation and loneliness as it is often incredibly difficult explaining your pain to others and how it impacts on your daily life. I am very fortunate that I have a hugely supportive husband who understands my condition. He works full time so that I do not have to work with my conditions. He also does a lot of the housework for me and is always there when I need him. He is my rock and I do not know what I did to deserve him.

I am also fortunate that I have a good medical team around me in terms of my GP Practice and the specialists I have seen in the past including my OT and my physiotherapists. It may not be a village per say but I have the core people I need. Try to find your core team and explain in as much detail as you can what you need from them.

Advocating for yourself

In terms of your medical team, what needs to be understood between each party is that when it comes to your health, you are making shared decisions. I have learnt over the years that one of the key ways to manage my fibromyalgia is through self management like pacing, resting, napping, reducing workload, reducing stress and exercising and meditating.

However, your health care provider plays an important role in your care and so in Module 2 of the Leva Programme it helps you to build assertiveness when it comes to what you want and need. The clear pointers it gives are:

1. Be clear and to the point
2. Describe how it makes you feel
3. Tell the person what you want to happen
4. Tell the person the impact this would have on you.

It also discusses body language such as sitting or standing upright, using a calm voice and I statements.

Another useful tool when a doctor or specialists suggests a new treatment, medication, surgery etc is to ask 4 key questions using the BRAN acronym

1. What are the benefits?
2. What are the risks?
3. What are the alternatives?
4. What would happen if I did nothing?

Mummy the Fibro Warrior Top Tip:

1. When it comes to your health, fight for what you believe to be right. You are the expert in your pain and by clearly explaining your pain and the impact it has on your life this should help others to understand what you need.

If there is one thing I’d like you all to take away today is that by building a strong community around you, you can start to handle your pain one step at a time. I need you to know you are doing the best you can, your child/children love you just as you are and you are Mummy the Fibro Warrior!

Until next time,

x

p.s. Who is in your community? What do you need from your community? Have you had any positive experiences of healthcare providers helping you with your pain? Do let me know in the comments below!

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