A long-term health condition (LTHC), or chronic disease, as it is also called, means that you have a certain illness that may not be 'cured' but instead needs to be managed.
"Managing a long-term health condition is like a full time job. You are only with your doctor for about 4 hours of the year in total. The rest is down to you."
I spoke with Chloe, who you will remember from the current Community Bridges Podcast episode, last week to find out a little bit more about living with a long-term condition and finding what helps.
Chloe was born with cystic fibrosis and developed diabetes related to this condition at a young age. For Chloe, this means treatment and self-management techniques every day.
Sharing lived experience
Chloe began her journey as a patient expert at university when she joined an NHS Patient Program; a 6-week course where she made action plans with peers to manage her conditions.
It was here that Chloe got first inspired to pursue teaching and learning with those also experiencing LTHC, hoping to share her experience of living well with cystic fibrosis and diabetes. And so when she started to come to the end of the course she considered volunteering following advice from a tutor.
This introduction into peer support and community building led Chloe to take part in the NHS expert patient program where she learnt to channel all she had learnt, as well as her ability to empathise and sympathise, into training which qualified her as a course facilitator
"This involved working with groups and performing in front of your training groups. Getting your prepared for your role."
This is the role Chloe plays at Self Management UK, where she started off as a program student and became a course leader. This is a key characteristic of this course, here they won't just tell you what you should be doing. You actually have an opportunity to work with people who are on the journey of managing their health condition, so you can learn and share with people who understand and are at different points along the journey.
One topic for example will be fatigue, so we will spend the session talking about fatigue, how we can self-manage fatigue by using exercise for example. This continues to help me because I can get involved with those discussions and we can learn from each other different tips that can help.
Fatigue can depend on how much fight your body is going through. Our body [people with LTHCs] has so much more to do, so understandably can get tired!
Tips to help with fatigue:
Take it day-by-day
Be kind to yourself
Fatigue can be because your body is working harder than someone without a long-term condition, it could be a side-effect of medication or it could be a thyroid issue or low iron. There are a lot of reasons so if you are experiencing ongoing fatigue and really struggling with it then you should speak to your doctor.
Getting into a routine
It can be difficult to maintain medication adherence and good daily routines that support your health. It's difficult because it's every day, all day, there isn't a break when you get tired. Or if you do, then you feel it afterwards. That's why you have a plan and stick to it, you get used to it, like any other routine. If you lose your routine it can be harder, it is easier to just keep to a routine, then you don’t have to think about it.
"With my diabetes I think about every single meal, how many carbs, sugars and nutrients I am getting. Even a short walk can impact your blood sugars, so your thinking about it all the time."
"It can be daunting to talk about you condition, especially if you have never spoken about it before. Maybe the first person you speak to you don't find helpful, but the second person might work out better. There have been people I have spoken to that haven’t helped me."
Perseverance has paid off for Chloe, she is in a role at Self management UK which gives her inspiration, purpose and belonging. The people there provide her with support as she does them. And life is just a little brighter.
How can I get involved?
As always, I am struck by the impact of community and sharing experience. Managing a LTHC sustainably and well is so hard to do by yourself. But this seems kind of obvious, if you are not spending time with people who manage their health condition then you can't learn the easy tips and tricks that can add a little comfort or relaxation to your day!
This course is based on how you feel. Some people do 2 courses in one day, others do a few a week or come back at a point where they are feeling more free. There is not pressure or stress it is what works for you.
Previously, the courses were held face-to-face in GP surgeries and community centers but now we have adapted everything to be online. Chloe mentions that this could actually be really helpful for people with LTHCs because they do not have to travel and can do it from the comfort of their own homes, so less disruptive to their day. On the other hand this could mean that some people may not hear about this learning opportunity because they are not at the GPs or community centers as much. And it may be difficult for people struggling with technology. Self Management UK have developed their online offer with their clients and can help you through any technical issues!
Please spread the word to anyone who you think could benefit - and get in touch if thats you! Call 03333 445 840 or email firstname.lastname@example.org.