Patient Stories

Every patient is unique, with their own symptoms and ways of dealing with them. However, some of our previous patients wanted to share their experience of the service and their stories of recovery with you. We hope this will reassure you about how the service can help with your symptoms, too.

We have also included patient stories from the Scottish charity Pain Concern. These reflect a programme similar to the PPSS service, and can help you to understand what to expect and how the programme may help you.

Simon's Story

Simon came to us last year after suffering from significant pain and fatigue. He attended our group sessions and learnt some self-management techniques that really helped him. This is his story of recovery.

What Is Self-Management?

Watch patient stories from Scottish pain charity Pain Concern about what it means to self-manage your pain. "You have to want to live again." That’s the key to managing pain, according to Diane. It can be a long, winding road, but many people living with pain have learnt strategies that help them to get the most out of life alongside their condition, rather than being dominated by it.

Julie's Story

Julie suffered from Chronic Fatigue Syndrome. She needed help to do everything, including eating and drinking, and she couldn't do anything that she enjoyed. Her symptoms meant that she had to stop work, and could only manage gentle activity in the afternoon. She suffered these symptoms for 15 years before coming into our service. This is her story of recovery and the tools she found most helpful.

Why Emotional Support is Vital to Recovery

Persistent symptoms can involve a lot of loss – of friendships, independence, and plans for the future. The emotional impact of these losses, as well as of the symptoms themselves, often hits people hard. People with long-term conditions can find themselves struggling with low mood, depression, anxiety, and isolation – this can in turn make the symptoms worse.

It's important to tackle these emotional impacts, as well as treating the symptoms. This doesn't mean that the symptoms are 'all in the mind', though. This video from Pain Concern explains what can be done to help.

Sue's Story

Read how Sue was able to manage her pain and fatigue following a PPSS 'Better Living' Group

"When I was first asked if I’d like to join a group on a course 'Better Living with Illness' I felt really unsure, but said I would go along to it to see what it was like.

When it came to the first day of the course, I felt very apprehensive and nervous, but told myself: “It is better to try it and not like it, than not try it at all, and possibly miss out on something good.” Also, I knew that if I didn't like it I could leave.

Well, all I can say is that the course was one of the best things I ever did. The people running the group were very approachable, laid-back, had a great sense of humour (which in my opinion is very important). They were non-regimental and made everyone feel very relaxed and welcome - an approach that stayed throughout the course.

Mixing with other people with the same or similar problems was fantastic, because it made me realise that I wasn't alone in life. It made me feel sane. I wasn't being judged, I was accepted and this made me feel normal. The other people in the group knew what I was talking about and could relate to what I was saying. I also learnt a lot about my illness and how to cope with it – all in a friendly and relaxed atmosphere. The list goes on. But to say it was a group I really looked forward to going to each session speaks volumes not only for the tutors and  group members but also the atmosphere and content of the sessions.

The initial nerves and apprehension are a normal feeling going into the unknown, so my advice to anyone being offered the chance to attend a group is: go along to it, and give it a try. It could be one of the best decisions you'll ever make."

Why Medical Investigations Aren't Always Helpful

Doctors and patients can both get caught up in an almost endless search for a cure, or a defined diagnosis of what's causing symptoms. Searching for a medical solution is understandable, but it can delay people in starting to learn to manage their symptoms. With the right support and guidance from healthcare professionals, people can move towards playing an active role in their care, often becoming less dependent on medication. Watch this video from Pain Concern to find out more.

Why Self-Management Programmes like PPSS?

'Self-management' doesn’t mean being abandoned to 'get on with it' on your own. Support can come from healthcare professionals, family, friends, voluntary organisations or support groups. If your symptoms are having a big impact, self-management programmes can help you to get your life back on track. This involves focusing on what's most important to you – this could be relationships, activities, work – and learning how to be more involved in these areas without flaring-up the pain. Watch this video from Pain Concern to find out more.

Julie says, "Have a go!"

If you are still not sure about whether our group work is for you, listen to what Julie has to say. It may be something you are unsure about, but it can help, as Julie discovered for herself.