Introduction to invisible illnesses:

Out of the millions of disabled people living in the UK, only a small percentage of people have illnesses that can actually be seen. Those with ‘invisible illnesses’, are often struggling with an array of symptoms, impacting on their daily life, however due to these difficulties not being instantly visible, can face a lot of judgement, challenges and lack of understanding.

It can also be hard for friends, family and carers to understand the difficulties and challenges of having an invisible illness. At CIIS we provide support for individuals with invisible illnesses and their relatives, friends and carers and we hope we offer some support, understanding and insight.

Here are a list of some of the invisible illnesses which some of our existing members have. This is not an extensive list, and just because your condition is not on the list, does not mean you will not be welcomed.

AS is a long-term inflammatory condition that mainly affects the bones, muscles and ligaments of the spine, leading to stiffness and joints fusing together. Other problems can include the swelling of tendons, eyes and large joints.

More details can be found here.

The term anxiety means a feeling of unease, such as worry or fear, which can be mild or severe. Anxiety is the main symptom of several conditions including panic disorder, phobias, Post Traumatic Stress Disorder (PTSD), social anxiety and Generalised Anxiety Disorder (GAD).

More details can be found here.

Arthritis is a common condition which causes pain and inflammation in a joint. The two most common types of Arthritis are Osteoarthritis and Rheumatoid Arthritis.

More details can be found here.

Bipolar disorder, formerly known as manic depression, is a condition that affects your moods, which can swing from one extreme to another.

People with bipolar disorder have periods or episodes of:

  • depression – feeling very low and lethargic
  • mania – feeling very high and overactive (less severe mania is known as hypomania)

More details can be found here.

Cancer is a condition where cells in a specific part of the body grow and reproduce uncontrollably. The cancerous cells can invade and destroy surrounding healthy tissue, including organs.

Cancer sometimes begins in one part of the body before spreading to other areas. This process is known as metastasis.

More than one in three people will develop some form of cancer during their lifetime.

There are more than 200 different types of cancer, and each is diagnosed and treated in a particular way.

More details can be found here.

Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person experiences persistent severe and debilitating pain.

Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.

More details can be found here.

Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person experiences persistent severe and debilitating pain.

Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.

More details can be found here.

Crohn’s disease is a long-term condition that causes inflammation of the lining of the digestive system.

Inflammation can affect any part of the digestive system, from the mouth to the back passage, but most commonly occurs in the last section of the small intestine (ileum) or the large intestine (colon).

Common symptoms can include:

  • diarrhoea
  • abdominal pain
  • fatigue (extreme tiredness)
  • unintended weight loss
  • blood and mucus in your faeces (stools)

People with Crohn’s disease sometimes go for long periods without symptoms or with very mild symptoms. This is known as remission. Remission can be followed by periods where symptoms flare up and become particularly troublesome.

More details can be found here.

Depression is more than simply feeling unhappy or fed up for a few days.

We all go through spells of feeling down, but when you’re depressed you feel persistently sad for weeks or months, rather than just a few days.

Some people still think that depression is trivial and not a genuine health condition. They’re wrong. Depression is a real illness with real symptoms, and it’s not a sign of weakness or something you can “snap out of” by “pulling yourself together”.

The good news is that with the right treatment and support, most people can make a full recovery.

More details can be found here.

Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high.

The hormone insulin – produced by the pancreas – is responsible for controlling the amount of glucose in the blood

There are two main types of diabetes:

type 1 – where the pancreas doesn’t produce any insulin
type 2 – where the pancreas doesn’t produce enough insulin or the body’s cells don’t react to insulin

More details can be found here.

Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are several different types of EDS that may share some symptoms, including:

  • an increased range of joint movement (joint hypermobility)
  • stretchy skin
  • fragile skin that breaks or bruises easily

EDS-hypermobile type (EDS-HT), also known as hypermobile EDS or EDS type III, is often thought to be the same as or very similar to another condition called joint hypermobility syndrome.

People with EDS-HT may have:

  • joint hypermobility
  • loose, unstable joints that dislocate easily
  • joint pain and clicking joints
  • extreme tiredness (fatigue)
  • skin that bruises easily
  • digestive problems, such as heartburn and constipation
  • dizziness and an increased heart rate after standing up
  • problems with internal organs, such as mitral valve prolapse or organ prolapse
  • problems with bladder control (stress incontinence)

Currently, there are no tests to confirm whether someone has EDS-HT. The diagnosis is made based on a person’s medical history and a physical examination.

More details can be found here.

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

More details can be found here.

As well as determining characteristics such as eye and hair colour, your genes can also directly cause or increase your risk of a wide range of medical conditions.

Although not always the case, many of these conditions occur when a child inherits a specific altered (mutated) version of a particular gene from one or both of their parents.

There are hundreds of genetic conditions, each having different symptoms, signs and treatments.

More details can be found here.

There are many different heart conditions and problems. Together, we call them heart disease.

Coronary heart disease (CHD) is the leading cause of death both in the UK and worldwide.

It’s responsible for more than 73,000 deaths in the UK each year. About 1 in 6 men and 1 in 10 women die from CHD.

In the UK, there are an estimated 2.3 million people living with CHD and around 2 million people affected by angina (the most common symptom of coronary heart disease).

CHD generally affects more men than women, although from the age of 50 the chances of developing the condition are similar for both sexes.

As well as angina (chest pain), the main symptoms of CHD are heart attacks and heart failure. However, not everyone has the same symptoms and some people may not have any before CHD is diagnosed.

CHD is sometimes called ischaemic heart disease.

More details can be found here or here

Incontinence is surprisingly common. It’s estimated that one in four of us will have a problem with bladder control at some time, and one in 10 will have problems with bowel control. This means that more people have incontinence than asthma, diabetes and epilepsy combined. Incontinence can often be an embarrassing symptom of many invisible illnesses, however they is help to improve these symptoms.

More details can be found here.

Insomnia is difficulty getting to sleep or staying asleep for long enough to feel refreshed the next morning.

It’s a common problem thought to regularly affect around one in every three people in the UK, and is particularly common in elderly people.

If you have insomnia, you may:

  • find it difficult to fall asleep
  • lie awake for long periods at night
  • wake up several times during the night
  • wake up early in the morning and not be able to get back to sleep
  • not feel refreshed when you get up
  • find it hard to nap during the day, despite feeling tired
  • feel tired and irritable during the day and have difficulty concentratingIt’s not always clear what triggers insomnia, but it’s often associated with:
  • stress and anxiety
  • a poor sleeping environment – such as an uncomfortable bed, or a bedroom that’s too light, noisy, hot or
  • cold
  • lifestyle factors – such as jet lag, shift work, or drinking alcohol or caffeine before going to bed
  • mental health conditions – such as depression and schizophrenia
  • physical health conditions – such as heart problems, other sleep disorders and long-term pain
  • certain medicines – such as some antidepressants, epilepsy medicines and steroid medication

There are a number of things you can try to help yourself get a good night’s sleep if you have insomnia.

These include:

  • setting regular times for going to bed and waking up
  • relaxing before bed time – try taking a warm bath or listening to calming music
  • using thick curtains or blinds, an eye mask and earplugs to stop you being woken up by light and noise
  • avoiding caffeine, nicotine, alcohol, heavy meals and exercise for a few hours before going to bed
  • not watching TV or using phones, tablets or computers shortly before going to bed
  • not napping during the day
  • writing a list of your worries, and any ideas about how to solve them, before going to bed to help you forget
  • about them until the morning

More details can be found here.

Irritable bowel syndrome (IBS) is a common, long-term condition of the digestive system. It can cause bouts of stomach cramps, bloating, diarrhoea and/or constipation.

More details can be found here.

Joint hypermobility means that some or all of a person’s joints have an unusually large range of movement.

Some people with joint hypermobility can have a number of unpleasant symptoms as well, such as:

  • pain and stiffness in the joints and muscles
  • clicking joints
  • joints that dislocate (come out of the correct position) easily
  • fatigue (extreme tiredness)
  • recurrent injuries – such as sprains
  • digestive problems – such as constipation and irritable bowel syndrome (IBS)
  • dizziness and fainting
  • thin or stretchy skinIf hypermobility occurs alongside symptoms such as these, it is known as joint hypermobility syndrome (JHS).

More details can be found here.

Lupus is a complex condition which affects many parts of the body and causes symptoms ranging from mild to life-threatening.

As the symptoms of Lupus can be similar to a number of other conditions, many of which are more common, it can be difficult to diagnose.

More details can be found here.

Lyme disease, or Lyme borreliosis, is a bacterial infection spread to humans by infected ticks.

Ticks are tiny spider-like creatures found in woodland and heath areas. They feed on the blood of birds and mammals, including humans. Ticks that carry the bacteria responsible for Lyme disease are found throughout the UK and in other parts of Europe and North America.

It’s estimated there are 2,000 to 3,000 new cases of Lyme disease in England and Wales each year. About 15% of cases occur while people are abroad.

Lyme disease can often be treated effectively if it’s detected early on. But if it’s not treated or treatment is delayed, there’s a risk you could develop severe and long-lasting symptoms.

More details can be found here.

Multiple sclerosis (MS) is a condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.

It’s estimated that there are more than 100,000 people diagnosed with MS in the UK.

The main symptoms include:

  • fatigue
  • difficulty walking
  • vision problems, such as blurred vision
  • problems controlling the bladder
  • numbness or tingling in different parts of the body
  • muscle stiffness and spasms
  • problems with balance and co-ordination
  • problems with thinking, learning and planning

More details can be found here.

Neurological conditions result from damage to the brain, spinal column or nerves, caused by illness or injury. There are more than 600 diseases of the nervous system.

Epilepsy is a condition that affects the brain and causes repeated seizures.

Epilepsy is estimated to affect more than 500,000 people in the UK. This means that almost one in every 100 people has the condition.

More details can be found here.

Sjögren’s (pronounced Show-grin’s) syndrome is an autoimmune disorder. The body’s immune system attacks glands that secrete fluid, such as the tear and saliva glands.

The effects of Sjögren’s syndrome can be widespread. Certain glands become inflamed, which reduces the production of tears and saliva, causing the main symptoms of Sjögren’s syndrome, which are dry eyes and dry mouth.

More details can be found here.

Obstructive sleep apnoea (OSA) is a relatively common condition where the walls of the throat relax and narrow during sleep, interrupting normal breathing.

This may lead to regularly interrupted sleep, which can have a big impact on quality of life and increases the risk of developing certain conditions.

More details can be found here.

Thyroiditis is the medical term for inflammation (swelling) of the thyroid gland, which can either cause abnormally high or low levels of thyroid hormones in the blood.

The thyroid gland is a butterfly-shaped gland found in the neck. It produces hormones that are released into the bloodstream to control the body’s growth and metabolism.

They affect processes such as heart rate and body temperature, and help convert food into energy to keep the body going.

There are several different types of thyroiditis.

More details can be found here.

Vasculitis literally means ‘inflammation of the blood vessels’.

Inflammation is your immune system’s response to tissue that has become injured or infected.

Any blood vessel can become inflamed like this, from large arteries (“arteritis”) to small blood vessels, in any place in the body. The larger the blood vessels affected, the more damage there may be.

All these variables mean there are many possible types of vasculitis, each with different symptoms and potential complications.

More details can be found here.

Have any questions? Looking for support?

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I normally have a hard trouble making friends , due to my health , with all the people I’ve met at ciis no one has ever judged me , I’ve made some fantastic friends but not only do we meet up regularly, we can also chat on Facebook . Best of all no matter what conditions we have its good to feel we belong and can be ourselves.

Louise, Mildenhall