Talking to other people about Long Covid

We asked young people with Long Covid and parents caring for young people with Long Covid about talking to others about their symptoms. Some of these parents also have Long Covid themselves.

In this section we cover:

●      Talking to health professionals

●      Talking to friends, family, and other people

Talking to health professionals

As a new condition, people found it challenging to talk about Long Covid with others. Many parents we talked to said that they had encountered health professionals who were dismissive of their child’s symptoms and suggested that their symptoms were ‘made up’, exaggerated or were psychological or anxiety-related rather than Long Covid. Sometimes people said the situation wasn’t helped if: testing wasn’t available around the time their child caught Covid, if they returned a negative test, or if they didn’t test positive for antibodies, or before Long Covid was a recognised condition.

Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.

Jasmine, Sasha and others had felt frustrated when symptoms were dismissed as anxiety or another diagnosis.

Rosie said that some doctors ‘seem to grasp the concept…more than others.’ She was frustrated that her physiotherapist appeared fixated on the lack of a positive Covid test result.

During their encounters with health professionals, some parents of young people with Long Covid told us that they felt they were being judged negatively as “hypochondriacs,” being “overprotective” or even that they might have “Munchausen by proxy” (when a parent or carer exaggerates or deliberately causes symptoms of illness in the child).

Richard (who is a GP) was worried that the paediatricians were thinking he was exaggerating his son’s symptoms and that he would get investigated by Social Services.

To hear more from people talking about experiences with health professionals, see Consultations with GPsConsultations with specialists and Long Covid clinics.

Talking to friends, family, and other people

People had mixed thoughts about telling friends and family about the Long Covid. Not everyone who was told about the illness appeared to believe them, or behaved in a nice, understanding manner. Gracie recognised that it could be hard for family living far away to understand Long Covid when she only visited on “a good day.” Deidre’s close friends believed her daughter had Long Covid when they saw her deteriorate.

Because it is new and can be an invisible illness (where it is not always obvious that someone is ill), struggling to understand Long Covid was a common reaction. Some parents described feeling ‘invisible’ and said that people didn’t speak to them in public anymore.

Charlotte, a parent with Long Covid, explained, “people will talk to my husband and not to me. You don’t feel like the same person anymore. It’s as though you’re a child. I feel like a child in a pram. That’s the feeling I get like they’re talking to my parent.”

Although most family members believed her, Maria said some of them did not realise the full extent of her illness until they saw her face to face.

People we talked to were aware that some people did not believe that they really had Long Covid (see Impact on Relationships).

Beth’s young daughter’s friends think it’s a “made-up thing” and find it difficult to understand why she needs to rest, can’t go swimming or might be feeling grumpy at times.

Raising awareness of Long Covid in children mattered to some of the people we talked to, although Evie said that she has given up talking to her friends about it. Abigail always told people she had Long Covid because “it’s new and if people don’t know about these things, how are we going to learn?”

Abigail says that although strangers can be unkind when she uses a wheelchair, friends have been ‘very accepting’ and ‘respectful.’

Harry said that the attendance lady at his school had been “really interested and supportive,” whereas Amira said that her teachers didn’t believe her and thought she just didn’t want to go to school. For more information on talking to schools, see ‘School and Long Covid’.

Evie doesn’t talk a lot to her friends because she ‘knows they wouldn’t understand.’ One person even thought that her symptoms meant she still had Covid.

To hear more people speaking about postural tachycardia syndrome (PoTS – an abnormal increase in heart rate that occurs after sitting up or standing), see ‘Symptoms and changing symptoms of Long Covid’.

It was sometimes challenging for parents to explain why they were unwell to their children. Kate had come up with a way of talking with her young son about her illness, who tries to be supportive ‘in his own way’.

Charlotte’s children thought she still had Covid and didn’t understand that she had an illness ‘that you can do nothing about.’

Kate tries to explain her illness to her youngest son on a scale of ‘how much Covid’ she has that day. About 15% would be fairly good, and 100% would be ‘full on poorly’.

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