Living With Chronic Illness – A Post Diagnosis GuideMarch 15, 2018
What is a chronic illness?
Chronic Illness Definition
A chronic illness (sometimes known as a chronic disease, or chronic condition) is a long-term medical condition. These illnesses cannot normally be prevented by vaccinations, or cured completely with medical treatment. The NHS refers to chronic illnesses as long term physical health conditions.
Chronic illnesses are often non-communicable diseases, but this isn’t necessarily the case. For instance, HIV falls under the umbrella of chronic illness due to its long-lasting effects, but it can also be passed from person to person.
Chronic conditions become more common with age, with approximately 80% of adults over 65 having at least one chronic illness, and 77% having two or more conditions.
Acute Illness Vs Chronic Illness - What's the difference?
Acute illnesses and chronic illnesses are both terms used to describe medical conditions. Both sound serious, but these terms actually refer to the length of the onset and overall duration of an illness.
Chronic conditions are long-term in every sense of the word. They develop slowly and symptoms often get worse over time. They can't normally be fully cured.
Acute conditions come on much more suddenly, but only last a few days or weeks – for instance, infections, broken bones and other injuries.
Types of Chronic Illness
Chronic illness is a huge spectrum, covering a wide range of symptoms and conditions. Here are just a few chronic conditions you’ve probably heard of:
All in all, chronic illnesses account for 71% of deaths worldwide, with cancers, heart disease, stroke and diabetes the leading causes of death.
Is Chronic Illness a Disability?
There’s often an overlap between chronic conditions and disability. A disability is classified as any physical or mental impairment that has a substantial or long term negative effect on a person’s ability to do normal daily activities.
Many chronic illnesses easily fall under this umbrella and this is something that’s taken into account by law. For instance, people who are diagnosed with the chronic conditions HIV , cancer or multiple sclerosis automatically meet the UK’s disability definition on the day of diagnosis. Moreover, many other chronic conditions have a detrimental and disabling effect on daily activities. For example, a painful arthritis flare-up might make it hard to get out and about, or mean that it's difficult to do things like cook for yourself.
That said, it’s worth mentioning that not everyone with a chronic condition will identify as having a disability, and not all people with disabilities have a chronic illness.
Coping With Chronic Illness
Stages of Coping with A Diagnosis
If you’ve just been diagnosed with a chronic condition, it’s normal to feel scared, sad and overwhelmed. It can be distressing to think about the long-term effects of a chronic illness, or to consider the changes and adjustments you might have to make to your lifestyle to manage the condition properly. Depending on the illness, you might even feel guilty or ashamed. This tends to be more common with “preventable” conditions such as Type 2 diabetes.
The Five Stages of Grief can be a useful framework to help you to understand the emotions you might experience if you've just received an unwanted diagnosis. Remember that you won't necessarily experience all these stages, or experience them in the order listed here.
All these emotions, and the physical toll of the condition itself, can make coping with chronic illness very challenging.
Coping Strategies for Chronic Illness
Having a solid support network, knowing the best ways to manage your health and practising self-compassion will all help you during more difficult times.
Building your support network
When you're ill, it can be tempting to isolate yourself from friends and family. We've put together these tips to help you keep your support network in place, and even grow it.
- Stay connected – having a solid support network that you can rely on will make coping with a chronic illness far easier. Don't be afraid to ask your loved ones for help when you need it.
- Join a support group for people with your illness. It can help to speak to people who are experiencing the same things as you and know that you’re not on your own.
- Understand your limitations and don't be afraid to say 'no'. Depending on your illness, some activities may become more difficult than they were before. If you're not up for something suggested by a friend or family member, trust your instincts. They'll understand!
Managing Your Health
Naturally, a new diagnosis will bring with it lifestyle changes. You might have to put more effort into managing your health in order to keep your condition under control. Here are some ways to make that easier:
- Find a doctor that you trust, who will answer questions about your condition honestly and openly.
- Get informed. If you’ve recently been diagnosed, learning as much as you can about your condition, its progression, and possible treatments will empower you and help you to make informed decisions.
- Live as healthily as possible. Treating chronic conditions normally involves a lifestyle change, whether that’s giving up smoking, eating more healthily or losing weight. If you can make these changes, you’ll find your condition much easier to manage and feel better overall.
- Get organised: There's a chance that you'll be taking a lot of medication to manage your condition. Find ways to organise yourself so that you don't forget to take it. For instance, a pill dispenser box can help you to remember to take the right pills each day. Also remember to talk to your doctor about what time of day and the right way to take your medicine.
Self-Care and Compassion
- Try to keep doing the things you enjoy. If your hobbies have become more difficult as a result of your illness, consider ways that you can modify them to make them more manageable, rather than giving them up all together.
- Be kind to yourself: It's easy to hate your body and think of it as an enemy when you're unwell. Try to treat yourself with the same compassion you'd give to a friend or family, rather than blaming yourself or your body for your health problems.
- Remember it's fine to have bad days. Be prepared for days where you don't even feel like getting out of bed. Chronic illness is mentally and physically draining, so don't punish yourself for days where you're finding it more difficult to cope.
Living with Chronic Pain
Chronic pain is any episode of pain that lasts longer than 12 weeks.
Chronic conditions such as rheumatoid arthritis, osteoarthritis, fibromyalgia, multiple sclerosis, cancer, chronic fatigue syndrome and endometriosis can all cause long-lasting pain. Furthermore, surgeries and injuries that don’t heal well can also be the underlying cause of chronic pain.
Learning how to deal with constant pain can be one of the most difficult parts of living with a chronic illness. It can affect your mood, mean that you end up missing days at work or just make it feel impossible to get anything done. Luckily, there are ways to manage and live well with chronic pain and illness.
How to Deal with Chronic Pain
It’s wise to take a holistic approach to pain, and address both mental and physical factors that could be contributing to the condition.
Practising meditation and deep breathing techniques can ease chronic pain. This is because it will help you to fully relax, which will then release tension from painful joints and muscles. It’s been shown that stress can aggravate pain, but meditation can help here too by promoting a general sense of mental wellbeing and calm.
Exercise probably feels like the last thing you want to do when you’re in pain. However, it’s hugely beneficial for many conditions. Exercising releases endorphins which elevate mood and dampen pain. Plus, it also strengthens muscles and improves your health and fitness, which can make you more resilient to further complications or injury. Gentle, low impact exercises such as walking, swimming and yoga can be a good starting point for those with chronic pain.
Get out of bed!
In years gone by, chronic pain would have landed you several weeks or months of bed rest. However, it’s been shown since that lying down all the time actually makes pain worse as it causes muscles and bones to weaken and stiffen. You’ll actually end up feeling far worse!
Avoid smoking and drinking
You might have to put your vices on hold for a bit. Pain can make it difficult to sleep and drinking alcohol won’t help, as it’ll reduce the overall quality of the sleep you do get. Being tired will lower your mood and make pain worse. Plus who wants a hangover too?
Similarly, although smoking can reduce pain in the short term, over time it can increase your sensitivity to pain and slow down healing. In addition to this, smoking causes degeneration by impairing the delivery of blood and oxygen to your body, which can result in lower back pain and osteoporosis.
A balanced diet has a lot of benefits for the body, including improving blood sugar levels (essential for those with diabetes) and reducing pressure on joints by keeping weight under control.
Get a massage
Treat yourself. A massage will soothe your muscles and relax your mind and body.
Physio will reduce your levels of pain and promote flexibility and mobility, making daily activities more manageable. A short course is normally all that’s needed.
Over the counter pain medication can be used to tackle flare ups so that you can go about your daily life. Paracetamol and ibuprofen are both options; however, the latter should not be used if you have certain medical conditions such as stomach ulcers.
If these don’t work, your doctor may be able to prescribe you a course of stronger painkillers that will make more of a dent in your pain.
Watch your mental health
Chronic pain and mental health conditions often go hand in hand. If you’re finding it difficult to cope, make sure you speak to a medical professional about it. They may be able to suggest counselling or therapy that will help you feel more able to manage your pain.
Make sure to read our next section on chronic illness and mental health too, for more advice on keeping both mind and body healthy.
Chronic Illness and Mental Health
It’s clear that chronic illness can have a profound emotional toll, as well as a physical one. Being diagnosed with a life-changing (or even life-threatening) illness is a lot to take on board and understandably affects many people psychologically. In some cases, this distress can bring on mental health conditions such as depression, anxiety and PTSD.
Depression and Chronic Illness
There’s a big link between depression and chronic illness. In fact, depression is considered a common complication for people with long-term medical conditions, with up to a third of people with chronic illnesses experiencing symptoms. This may also come hand in hand with anxiety.
It’s easy to see why this is – chronic illness can affect your ability to do things you enjoy, which can lead to feelings of despair and a loss of self-confidence. Painful symptoms, loss of mobility and even medication used to manage a condition can also exacerbate feelings of depression.
The following chart shows the chance of experiencing depression for different chronic conditions:
Depression is itself a chronic condition, and living with both this and another illness can be incredibly exhausting.
Remember that you don’t have to go it alone though; if you’re experiencing symptoms of depression, we urge you to seek help. It’s easy to just see feeling sad as part of your condition, but that doesn’t have to be the case, and depressive symptoms shouldn’t be overlooked simply because you’re ill anyway.
Mental and physical health are dependent on each other, and improved wellbeing will do wonders for your health overall.
How to cope with depression
Post Traumatic Stress Disorder (PTSD)
PTSD is a psychiatric disorder that can affect people who’ve experienced or witnessed a life-threatening event. Symptoms include:
Post traumatic stress disorder is commonly associated with military service, but in reality any type of trauma can trigger this condition. This includes trauma as a result of chronic illness – for instance, from being diagnosed with a life-threatening condition like cancer, or having to endure repeated surgeries. Other symptoms, such as chronic pain, can also give rise to PTSD due to the way they impact quality of life.
If you think you’re experiencing post traumatic stress disorder, contact your doctor to discuss treatment options. The main treatments are likely to be psychotherapy, such as cognitive behavioral therapy (CBT), and medication.
For PTSD, trauma-focused CBT is normally used. This will help you to gain control of your fear and trauma by thinking about your experiences in detail and talking them through with your therapist.