Long term conditions or chronic diseases are health problems that can’t be cured, but can be controlled and symptoms eased by medication or other therapies. Examples can include arthritis, asthma, coeliac disease, diabetes, epilepsy and high blood pressure.
Getting a long-term diagnosis can be frightening and extremely stressful. It can bring new challenges into your life and new routines to get used to. As different conditions come with different challenges there is no ‘one-size-fits-all’ way to cope, but you may find some of our suggestions helpful.
Do some research
After your diagnosis, you may find it helpful to find out as much as you can about what’s happening to your body, and what you can do to manage it. The NHS website is a useful resource, as are specific organisations that focus on your condition.
It’s good to take an interest in developments related to your diagnosis, but try to avoid following every journal and website religiously. You are more than your condition and maintaining interests, relationships and your emotional wellbeing is really important.
If you go to see your GP or consultant, write down any questions you’d like to ask before you go and jot down their responses.
Pay close attention to yourself too. Keep a diary of your symptoms and observe what seems to improve them or make them worse. This is especially useful for conditions that can be affected by diet.
If you’re diagnosed with a long-term condition, tap into all the support available to you. The NHS has an online long-term conditions assessment that may help you with this.
Some people also find it helpful to meet other people going through the same challenges as them. Some useful places to look include:
- Arthritis Care
- British Heart Foundation
- British Lung Foundation
- Coeliac UK
- Diabetes UK
- Epilepsy Action
- HealthUnlocked – social network for people with long-term conditions
- Myconditionmylife.org – support groups for a range of conditions in Scotland
- Self management UK – self-management courses to help you take control of your condition
Searching for organisations, forums or support groups related to your condition on Google is a great way to find out what you can access online or in your local area.
Having a long-term condition can be frustrating, stressful and upsetting. In fact, people with a long-term condition are two or three times more likely to develop mental ill-health (Mental Health Foundation).
It’s important that you allow yourself to experience your feelings – adjusting to your new life can be almost like a grieving process:
- Cry if you need to
- If you feel angry, find a safe way to express this. This could be something as simple as listening to music or writing down your emotions
- Relaxation techniques such as mindfulness can help to give your mind a break when you’re feeling stressed or worried. You can find out more about these in our mental health advice blog
- Although talking about your feelings can be hard, it can help to find someone you trust to confide in. Just explaining how you feel can feel like a weight has been lifted. This is where support groups (see above) can come in handy
- Try to make time for the little things you enjoy, such as listening to music, watching a film or having a relaxing bath
- If you feel overwhelmed by your emotions, you can call Ben’s free and confidential helpline on 08081 311 333 or if you’re not ready to talk, you can use our online chat.
This won’t be easy; chronic conditions can flare and then symptoms subside. Don’t give up, speak about how you are feeling; physically and emotionally. Know that there will be other, better days, and if you can’t be positive, that’s okay too. Be kind to yourself.
Having a long-term illness may affect the way that you interact with your friends and family, especially if it leaves you feeling tired and drained. However, you can find ways to keep your social life.
- Use your time wisely – focus on those relationships that are most important to you and avoid people who stress you out!
- Keep activities short and try not to cram in too much
- Give yourself a rest period before going out to conserve your energy
- Suggest doing quieter activities with your friends, such as staying at home with a movie
Let family and friends know about the challenges you are facing and point them towards places where they can find out more.
If a condition lasts for more than 12 months and affects your day-to-day life it may be considered a disability. If you fit certain criteria under the Equality Act 2010 your rights as an employee, student and individual are protected.
There is also a wide range of financial support available. This ranges from sick pay and benefits to discounts on things like council tax and help with housing. All of this help may be dependent on your income and savings levels – so it’s important to get good quality advice.
A new chapter
Listen to advice from your doctor and build it into your daily routine. Becoming a ‘self-manager’ can help you to feel in control and may enable you to keep your symptoms in check. It may help to set up reminders in your calendar or smartphone to help build a routine.
Some of the things you may have taken for granted before – e.g. driving, doing sports, being able to drink alcohol – you may not be able to enjoy anymore. Try to avoid focusing on what you’ve lost, and try and find new things to enjoy. You could even suggest trying a new activity with friends.
If you work, keep your manager in the loop about your progress. Find out what your company can do to support you in your workplace. If you have been off sick, discuss with your GP when it would be appropriate to get back to work and see if they can give you a note of suggested workplace adaptations. The NHS website has a useful factsheet on working with a long-term condition (PDF).
Ben is here to provide support for life to those who work in the UK’s automotive industry and their families. You can ring our free, confidential helpline on 08081 311 333 or use our online chat.