Living with a long-term health condition and/or disability can be a real challenge and often leave patients feeling isolated and alone. However, there is a lot of support available. It’s about finding what is right for you and connecting in the right way.
Condition-Specific Support Groups
Perhaps the most common and obvious choice of support is through a health charity that works specifically with the medical condition or disability that you have. These are particularly helpful after a diagnosis when you need to learn more about your condition or if you are struggling with a specific aspect of your condition. It allows you to share experiences with others and access information that is reliable and supportive.
Groups are often run online which reduces the time and energy required to attend. But there are still face-to-face groups on offer and often events and conferences that you can attend. For pituitary conditions, The Pituitary Foundation should be your first point of call.
Condition Specific Support Groups - The Pituitary Foundation: https://www.pituitary.org.uk
2. Mental Health Support
The NHS reports that around 40% of people with depression and anxiety disorders also have a long-term condition.
The Mental Health Foundation reports that: ‘Having a long-term physical condition can lead to social isolation, low self-esteem, stigma and discrimination. You may feel tired, frustrated, worried or stressed, especially when dealing with pain, tests, treatments or flare-ups’.
Therefore, we must ensure our mental well-being is looked after. There are many support groups, talking therapies and online communities that can help. Vita Health Group offers talking therapies through the NHS which look to:
Explore strategies and skills to manage your symptoms of anxiety and low mood which in turn will help you to manage your LTHC.
Improve your quality of life.
Look at the links between your thoughts, behaviours, physical symptoms and emotions, and then practice key tools to make some helpful adaptations, with an aim to help you live well with an LTHC.
Mental Health Support: https://www.vitahealthgroup.co.uk/nhs-services/nhs-mental-health/living-well-lthc/
3. Social Prescribing
This is an approach that connects people to activities, groups, and services in their community to meet the practical, social and emotional needs that affect their health and well-being. This makes it perfect for those affected by LTHCs.
Generally, local agencies such as local charities, social care and health services refer people to the system. You’ll then be assigned a link worked who will help you create a personalised plan of action based on what matters to you — although in many areas there are also options to refer yourself.
Social Prescribing: https://www.england.nhs.uk/personalisedcare/social-prescribing/
Social Prescribing - Self Referral: https://www.theaccessgroup.com/en-gb/blog/hsc-social-prescribing-self-referral-how-does-it-work-and-will-it-work-for-you/
4. Meeting New People and Making Friends
Scope — the disability equality charity in England and Wales that provides practical information and emotional support when it's most needed, and campaigns relentlessly to create a fairer society has a comprehensive guide on different ways to make friends and meet new people whilst also pursuing hobbies and interests or visiting new places.
It looks at a range of safe ways to meet others including apps, Facebook groups, online communities and be-friending services. There are some great tips for meeting up with people in person and what groups are considered to be safe and supportive to their members.
Ways To Meet New People and Make Friends: https://www.scope.org.uk/advice-and-support/meeting-new-people-making-friends/
5. Industry Specific Networks
The Ben Support For Life Project is a great example of a programme aimed specifically at those working in the automotive industry. It supports both individuals and companies — those who are currently employed and those who have been previously employed in the industry.
Silvercloud is an online platform that has been developed using Cognitive Behaviour Therapy - which focuses on the relationship between our thoughts, feelings and behaviours. It tackles many areas including sleep, resilience, health anxiety, stress, money worries and mindfulness.
You can also chat with the project online or call the helpline. It's free & confidential and available Monday to Friday - 8 am to 8 pm.
Call - 08081311333Email - supportservices@ben.org.ukChat online — https://ben.org.uk/get-help/#live-chat
Industry Specific Networks: https://ben.org.uk/how-we-help/for-me/articles/silvercloud/
These five options are just a few ways in which to connect when you have a long-term health condition. What works for one person may be different to another even if the health condition is the same or they work in the same environment or have a shared interest.
That’s why what you choose to follow is unique to you — without comparison. Sometimes it can take a long time to find the right thing for you.
Don’t be afraid to experiment. Trying different things is a great way to discover the things that matter to you — the method of delivery that suits you and the outcomes you are searching for.