How to live with a chronic longterm illness (10 ways)
1. Talk with people who have the same illness
Sharing with and learning from people who have the same feelings as you can help you cope with your own illness.
2. Find a support group – in your area for people who have the same chronic illness as you.
Many organisations and hospitals run support groups. Ask your GP or hospital doctor to hep you find one. If they do not know one, and if you have diabetes, Diabetes UK may know a support group in your area.
3. Find an online group. There are online blogs and discussion groups about many topics, and you may find support this way.
4. Become an ‘expert patient’ for your illness
Expert patients are defined as people living with a long-term health condition who are able to take more control over their health by understanding and managing their condition. This leads to an improved quality of life.
There is no badge you can get to become an expert patient. But these are the skills of an expert patient:
- Know a lot – about your disease
- Understand your drugs – in detail
- Know how to use the NHS – and social care services – for your disease – e.g make sure you are under the care of doctors and nurses with an interest on your disease, and they talk to each other. You need to do this to coordinate your care (see below).
Knowing how the NHS works, hugely helps communication between, for example, your GP and hospital consultant(s)
- Get involved with teaching – other people with the disease how to get better care – e.g. via a local charity, online group or hospital information days
- Keep up to date – using social media (especially Twitter) to keep up to date with advances in your disease.
More about expert patients here.
5. Coordinate your care
This part of being an expert patient.
In an ideal world, the specialists you see for your heart, your diabetes, and your arthritis would talk with each other about your medical care. In the real world, this doesn’t usually happen. A good GP can put the pieces together to make sure your treatments are good for the whole you. But you have a role too in making this happen.
6. Tell others about your chronic illness
You may find it hard to tell others that you have a chronic illness. You may worry that they will not want to know about it or that they will judge you. You may feel embarrassed about your illness. These are normal feelings. Thinking about telling people can be harder than actually telling them.
People will react in different ways. They may be:
- Surprised
- Nervous – some people might not know what to say, or they might worry they will say the wrong thing. Let them know that there is no right way to react and no perfect thing to say
- Helpful – they know someone else with the same illness so they are familiar with what is going on with you.
You may look and feel fine most of the time. But at some point, you may feel ill or have less energy or be irritable. You may not be able to work as hard, or you may need to take breaks for self-care. When this happens, you want people to know about your illness so they understand what is going on.
Tell people about your illness to keep you safe. If you have a medical emergency, you want people to step in and help. For example:
- If you have epilepsy, your coworkers should know what to do if you have a seizure
- If you have diabetes, they should know what the symptoms of low blood sugar are and what to do.
7. Let people help you
There may be people in your life who want to help you take care of yourself. Let your loved ones and friends know how they can help you. Sometimes all you need is someone to talk to.
You may not always want people’s help. You might not want their advice. Tell them as much as you feel comfortable sharing. Ask them to respect your privacy if you don’t want to talk about it.
If you attend a support group, you may want to take family members, friends or others along. This can help them learn more about your illness and how to support you.
If you are involved in an online discussion group, you might want to show family or friends some of the postings to help them learn more.
8. Ask yourself what you can do for others with the illness
See if there is a charity or hospital information team which you can volunteer for. Many health charities rely on volunteers.
Find out if there are talks or classes about your illness in your hospital. This can be a good way to meet others with the same illness. It will help them and you, as you will have to gem up in on the disease.
All of this will make you feel better about yourself too, and learn things.
9. Beware of depression
Dark, dreary moods plague a third or more of people with chronic diseases. Depression can keep you from taking important medications, seeing your doctor when you need to, or pursuing healthy habits. Read up on the signs of depression. Let your GP or hospital consultant know if you think you’re depressed or heading in that direction.
10. Get help with your daily tasks
You may need help with your self-care tasks, getting to appointments, shopping, or household chores. Keep a list of people who you can ask for help. Learn to be comfortable accepting help when it is offered. Many people are happy to help and are glad to be asked.
If you do not know someone who can help you, ask your doctor or social worker about different services that may be available in your area. For example, you may be able to get meals delivered to your home, or other services.
Summary
We have explained how to live with a chronic longterm illness (10 ways). We hope it has helped you.
Other resource
MyHSN has other related articles.
How to become an expert patient
Difference acute and chronic illness
How to speak to patients with chronic conditions
