Long term health conditions

On being diagnosed with a long-term health condition

We interviewed young people with long-term health conditions who had been diagnosed at birth or when they were a few months old, as well as others who were told about their illness when they were children or in their teens and one young woman who was diagnosed in her early twenties. We talked to young people who had been diagnosed with the following long-term (chronic) conditions: asthma, chronic eczema, chronic pain, congenital heart problems, cystic fibrosis, epilepsy, juvenile arthritis, kidney disease, chronic fatigue syndrome (CFS/ ME), morphea, muscular dystrophy, sickle cell disease, scoliosis and type 1 diabetes. 

Those diagnosed at birth or as younger children tended to learn about their condition gradually as they grew older. Some young people said that initially their symptoms were minor and didn't really affect them very much. They remember going to see doctors in hospitals but were able to go to school and join in the activities with other children. One young woman with juvenile arthritis said that when she was a child she was unaware of how serious her condition was or how it was going to affect her life. Another woman, with cystic fibrosis, said that her diagnosis only began to 'sink in' at the age of 10 when she developed an infection and her symptoms got worse. Others remember that as children they spent a lot of time in hospital and missed out on schooling and friends.

Sometimes a young person's condition was discovered after a sudden illness. Several young people said that they developed symptoms fast and within days or weeks they were admitted to hospital. A girl who was diagnosed with epilepsy after a sudden seizure said that there had been no earlier signs of the illness 'One day I was OK and the next day I was someone with epilepsy'. One young man diagnosed with juvenile arthritis said that his physical problems appeared very quickly and within a few weeks he found himself using a wheelchair and a Zimmer frame. Until then he thought that only old people got arthritis. 

Symptoms of both asthma and of scoliosis sometimes came to light during school sports lessons. The father of one young woman recognised her diabetes symptoms (thirst and tiredness) because there were others in the family with diabetes. Some young people said that they had symptoms for a long time before they were correctly diagnosed. One woman with cystic fibrosis thought that there was a lack of awareness of her condition twenty-three years ago. Another young woman who was diagnosed with cystic fibrosis at the age of four had first been misdiagnosed with a number of other conditions including asthma and milk allergy. 

Doctors sometimes seemed to think that a mother was exaggerating her child's symptoms. One young woman said that it was the nurse at an A&E department who realised how worried her mother was and decided to do a test that revealed that she had cystic fibrosis. In another case the mother was told by a doctor (in another country) to go and have another baby and to stop worrying about her son. The parents decided to bring him to the UK where he was diagnosed with muscular dystrophy. 

It can be particularly difficult for teenagers to be diagnosed with a long-term condition that requires long-term treatment and medical supervision. Some said that they found it very hard to accept their diagnosis and reactions often included shock, depression and denial. A girl who was later diagnosed with ME/CFS (also called chronic fatigue syndrome) didn't want to admit she was feeling unwell. A young woman was shocked to be diagnosed with epilepsy even though her father has the same condition. Another young woman with epilepsy was angry and remembers thinking 'why do I have to have this fucking illness that is going to ruin my life'. Looking back, she thought that to have been able to talk to other young people with the same condition would have helped her a lot. A young man diagnosed with HIV at the age of seventeen said that he felt that doctors had 'lied and cheated'. The HIV test was presented as a routine kind of test and he had no prior counselling and the doctors didn't explain clearly about how his illness would affect his life. 

It can be very upsetting to have physical symptoms that are not explained, or be given a diagnosis for a condition that has no clear treatment. One young woman started having abdominal pain at age fourteen around the time of her period. The pain got worse as time passed and remains unexplained. Her condition is described as 'chronic pelvic pain'. A young man was told that he had CFS/ME but was told that there was no treatment apart from plenty of rest.

Some young people knew that their condition could be passed on to their own children and/or had relatives with the same condition. Being a 'carrier' of a specific gene means that you can pass the condition on to a child. In some conditions this might only happen if the person you have the child with is also a carrier of the same gene. Young people with sickle cell disease and cystic fibrosis for example are very aware their partner might need to be tested before making decisions about starting a family. 

Sometimes people with asthma, arthritis, epilepsy and type 1 diabetes knew that they had someone in their family with the same condition while others said that they were the first one in their families to have it. However many conditions do not have any known genetic link and people wondered about what might have caused their illness. One explanation for ME/CFS is that it is caused by viral infections like glandular fever. HIV (the virus that can lead to AIDS) is an infectious virus that can be transmitted through unprotected [no condom] sexual intercourse (See our section on HIV). 

No two young people are exactly the same and long-term conditions affect people differently. For example two of the young women interviewed who had cystic fibrosis had few or no symptoms. One of them has never needed to have intravenous (IV) antibiotics. Both of them are aware that their condition can deteriorate following an infection but at present their condition is stable and doesn't really affect what they can do. However, the other two young women we talked to with cystic fibrosis have regular IVs. Young people with juvenile arthritis also had very different experiences, there are 8 different types of Juvenile arthritis. Of those interviewed one is stable but she has needed a hip replacement and has problems with stiffness and mobility in parts of her body; a twenty-three year old young man diagnosed at the age of two is still on steroid treatment while the other young man has been in remission for the last two years and expects to be gradually be taken off his medication. A similar picture emerges for those with asthma who are either improving, staying the same, or where their symptoms are gradually deteriorating.

Most of the young people we talked to said that they now accept their condition and, as one young woman with scoliosis put it, 'learn to work with it rather than against it'. They believe that they have no choice but to try to live everyday as positively as they can for themselves and for those they love (see 'Dealing with feelings and emotions').

Last reviewed July 2017.

Last update May 2012.


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