PBC Foundation
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Sharing words of kindness with you all

Dear all, recently a friend got diagnosed with a scary illness. Her partner asked me to share some thoughts and after writing this up I realised I shared my own experiences on how to move forward with PBC. Maybe it is empowering for some of you to read and I look forward to reading your stories.

Dear friend,

Difficult decisions, heartbreaking ones. Operate, do not operate yet, second opinion. I can but share my own experiences and what made me get out of the turmoil on being and feeling depending on so many other people and decision makers. So this is in non chronological order how it worked for me and keeps working for me with being sick with an unknown outcome. It is all easier said then done, so some will sound like things everyone says a thousand times. The most important is that you will one day start to live this, it is a proces. Letting go and accepting and living in the moment is not a switch. It is a process. And the path can be rough but you can walk it in a way that life gets so much better for you.

The first step is create the circumstances in which you have space and time for yourself and this proces.

No pressure, not from anyone to find yourself back and feel your gut feeling about things again. Creativity is healing, look for time and space to write and paint or sing or do whatever thing you wanted to do as a child and could never do. It being ballet dancing or taming tigers at a circus. Having goals without pressure, just for enjoyment is essential.

Inform yourself on your disease, get second and if needed third opinions. Don’t expect a magic wand from anyone. Always remember: You are You. You are not your disease. Make this your mantra. Don’t let the illness become you. My favourite mantra was: Stephen Hawkins is brilliant, he fathered children, he can do this I can do this. He also cheated on his wife with his secretary a path I didn’t choose;-)

No one wil feel your fears the way you do. Do not expect that. Some people are more empathetic than others. Depending on their nature, depending on their own experiences. Draw a line where people are costing you energy. You need all your energy for yourself now. You will make new, better friends, you will loose some. That is part of the process. I have seen it with myself and many patients. Start withdrawing from people even if it is temporarily who cost you energy. Guard your energy. Be kind to yourself.

I can send you some good articles which will give you support on this.

Find ways to relax. Relaxation works on your blood flow, immune system and healing. Whatever works for you. I don’t like to meditate, the stillness scares me, the immobility aches. I like to put energetic music on in the kitchen and dance quirky in the morning, I love cooking. I found peace doing Yoga Nidra (lots of Youtube video’s) and using the Insight Timer application. There are some very good comforting talks and guided meditation on there, I can send you links or you can find me under my name so I share my list with you if you download the application.

You will go through a rough period, feeling alienated, not understood while life carries on in all it’s forms around you, nothing changed for other’s. Accept. You are allowed to feel sorry for yourself. Being sick is a lonely process. Find other’s in similar situations to talk about how you feel but be careful not to spend too much time with people who are very needy and stay too long in that phase for attention.

Set goals. Small goals. Big goals. One of the first things I did was write down what I like to do! This can be anything. Goals are important so you keep building your future.

Enjoy. The tiny things. Which you see all around you. Happiness is there. In the presence of all things around us. Not in our expectations, constructs of society or socialisation.

Be kind to yourself and others. Above all be good to yourself. Whatever is needed to make you feel happy. Take it. Go for it. Live it.

Drop me a line if you like to chat. Be confident. You will get through this. Big hug, Martina

2 Replies

This is really important. Even for those of us who aren't at the catastrophic stage or for people in general who are suffering with any kind of illness, to know and internalize these points. So important! I was thinking last night about what is important to me (being with my family) and how it just doesn't happen enough. Life and its responsibilities (work, household care, errands, other people's demands) get in the way and then...poof, it's over. So before poof, it's over, I want to change that and spend more time with the people I love. I just hope that they want to spend time with me...it's not always possible.


Thanks for these wise helpful words Martina. Diane


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