I first saw a leaflet for the Expert Patient Programme at my GP surgery. I had never heard of self-management courses, and having some support with my condition sounded like something I could benefit from.
My first session was not what I was expecting. I arrived to a room full of people over the age of 40, some over 60, and here I was, a healthy-looking 20 year old. I nearly panicked and left, but I decided to stick it out. About 30 minutes into the session, as I got to know the people in the group - our conditions, why we were at self-management and what we hoped to achieve -I felt an instant sense of belonging. I could open up and speak about my condition to people, something that I wasn’t comfortable with, even among friends and family, let alone in a group of strangers.
I live with cystic fibrosis, a chronic life -threatening condition I was diagnosed with when I was 6 months old. It’s a genetic disorder, which causes a faulty protein and results in thick sticky mucus to develop, affecting multiple organs; notably this clogs the lungs and stomach. I am more prone to infection, develop more severe lung infections than the average healthy person, and can’t digest fat in food. There is no cure, only treatments to manage the condition. I do chest physiotherapy daily, take digestive enzymes with meals, and have a range of other medications I take daily. I also have cystic fibrosis related diabetes, a complication I was diagnosed with at 14.
In addition to the physical symptoms and treatments, my condition impacts my mental (emotional) health too. It’s a hidden condition, which I generally find hard to talk about; I don’t like to make a fuss, especially as I don’t look sick. Some people don’t know what cystic fibrosis is at all. I do find it difficult to explain how it affects me, and this can be frustrating. Most people are very understanding, although I have had some odd comments, and my condition has got in the way of relationships in the past, which is upsetting.
Most of the time, I get on with it. Sometimes, I do feel sorry for myself and wallow in self-pity; who doesn’t, right? There have been times I’ve let it define me and overwhelm me - when I feel tired and I ache and I can’t stop coughing, I just feel so miserable.
Then there are times when people tell me how well I’m coping, how healthy I look, when on the inside I feel anything but. I skip treatments and don’t check my blood sugars very often. I eat tons of sweets knowing that I won’t have taken enough insulin with them. I feel guilty, but I have a sweet tooth and this is my way of coping (rebelling) against my illness.
Due to cross infection, people with cystic fibrosis can’t meet for risk of catching each other’s bugs and making each other sick. Of course, if I need someone to talk to there’s my doctor, the nurse, my parents or my friends for emotional support. But I wanted to talk to a sick person, who also knew what it was like to feel different.
When I was on the self-management programme I felt I could really connect with people for the first time. The first time I truly felt supported, as people could relate to me and I could relate to them. All of my confusing emotions, frustration, isolation and embarrassment over my condition, which left me feeling so guilty, were starting to make a little more sense. I felt a huge relief. As a volunteer, I continue to develop this sense of belonging and wellbeing.
During the six weeks of the course, I learnt a lot and felt supported both by other participants and the tutors. On the last week, the tutor said I would make a really good tutor and that I should sign up. I was flattered, but with the little confidence I had in myself, I didn’t really think people would want to be tutored by someone of such a young age. I did take the volunteer forms home but, being busy with university, I just didn’t have the time to commit.
It was six months later when I was living back at home with my parents, having taken temporary withdrawal from university due to health problems, that I became involved with self management uk. I remembered Mary, who said I would make a good volunteer, and this pushed me to go for it.. I needed something new to do and I wanted to use my time doing something worthwhile to help others.
While I was on tutor training, I was hopelessly shy. I barely spoke a word on the first day and on my last training session, when I had to deliver an activity as a tutor, I was shaking and my mouth went dry. Looking back now, having delivered my first course, while I still get nervous and stumble on words, I can see a real physical change in the way I speak in public. This is something I’m most proud of.
On the first week of the course I was facilitating, I was still not very confident in my abilities and knowledge to deliver the course Then, as I listened to the other participants’ stories, learning about their conditions and difficulties, I found I was able to relate, and then use my experience to help on things such as diabetes management and breathing techniques. Having such positive responses from the participants and feedback from my co-tutor, I gained confidence in myself.
Volunteer tutors have additional support from everyone at self management uk, including contract managers, trainers, and other volunteers. The person who made my experience much more positive was my co-tutor, who was hugely supportive and encouraging throughout my first course. He has been involved with self management uk for over 10 year and has delivered over 100 courses. Tutoring alongside him made the whole experience far less scary and his confidence put me at ease.
Since I delivered my first course, it surprises me how far I have come. I have spoken at a Wellbeing Conference, representing self management uk, talking to a room full of healthcare professionals about my experiences with a long-term condition and with self-management. I’m also setting up my own society and support group at my university for people with disabilities, something I would never have considered doing without training as a course facilitator.
Not only have I developed my self-confidence, but also I have benefited physically. I have become very self-aware and mindful of my health through talking about my experiences. Being a tutor motivates me to take care of myself, and being more confident to take control of my life.
The most important thing I take from volunteering with self management uk is that I am not alone. Having the skills to confidently speak up about my condition has also allowed me to become more open with my doctor, my family and friends, even the wider community. I feel more supported than ever, and that makes me happy.
I’ve been self -managing for two years, this is how long I’ve been aware of the concept of self-management. The reality is that I’ve had to manage for practically my whole life. The journey has not been an easy ride at all, but I finally feel I’m back on track. Engaging with self management uk has been a new beginning, and I look forward to what’s to come.
