Experiences of vaccination for Covid-19 and vaccine decision-making amongst people with Long Covid

This page covers:

  • Vaccine-related information and campaigns in relation to Long Covid
  • Reason for deciding to be vaccinated
  • Reasons for uncertainty or deciding against vaccination
  • Perceived after-effects of the vaccine – positive and negative

Vaccine-related information and campaigns in relation to Long Covid

We spoke to some of our participants before a Covid vaccine first became available, but others were able to think about what having a vaccine might mean for them. A few people felt that vaccine information and campaigns should have explained that, because getting vaccinated lowered the risk of getting Covid, it also lowered the risk of getting Long Covid. Sara said people in the general community who were worried about being vaccinated should be helped to understand what having Long Covid is like. Ben agreed. He said he “wouldn’t wish” Long Covid on anyone and people needed to know that for many people Covid wasn’t “just” like having a bad cold or flu. He had heard that some people with Long Covid had felt that their symptoms had reduced after having the vaccine, but others said they felt worse.

Ben said it was disheartening to see people saying in the media that Covid is “just a cold”. He thought vaccine campaigns should also highlight the true extent of Long Covid.

People also said the advice around when to be vaccinated after having had Covid–19 needed to be clearer. For example, Fiona B had had conflicting advice on this. Jamie said he was uncertain about getting the vaccine because of the lack of information about any impact it may have on his Long Covid symptoms. He described this as “another unanswered thing”.

Fiona B felt she was given conflicting advice about how long she should leave between her Covid infection and her booster vaccine. The staff who vaccinated her said a four-week gap was enough, but A&E staff said she should have waited six months.

Vonnie said she had been too ill to get her vaccine. She was not ‘anti-vax’ but she was unclear about whether she needed to be vaccinated if she still had antibodies after having Covid.

Reasons for deciding to be vaccinated

Many of the people we spoke to had either been vaccinated already or were planning to get the vaccine when it was offered to them. They gave a variety of reasons for deciding to be vaccinated. Shaista felt very pleased that she had been offered the vaccine. At the time she was interviewed children weren’t yet being vaccinated for Covid, but she was “very relieved” that other adults in her family had been vaccinated too.

Shaista said she felt relieved and lucky to have been vaccinated. She said the vaccine roll-out was a testament to the scientists and NHS teams who had worked extremely hard on it.

Some people felt that vaccination was an important way of protecting everybody against Covid and preventing those with Long Covid from being reinfected. Zoya said that her “level of cautiousness” and anxiety about reinfection was lower after vaccinations started to happen. Lucy told us that she was “really, really grateful” that her brother had decided to get vaccinated to help to protect her from being reinfected. He had said “If I’m going to do anything to support my sister, I’ll do it”.

The possibility that the vaccine might lead to improvements in Long Covid symptoms was another motivation for getting it. Judy was keen. She said: “I’ll bite their hand off when they offer [me the vaccine]. Partly because I think it’s really important to get it for everybody but also because I hope that I’ll be one of the people that… their symptoms seem to get better from having the vaccine”. Ben said he would “take the vaccine tomorrow if there was an option” and he had asked his GP if he could “get him up the list”.

If they had felt well enough to travel, a few people with Long Covid said they had decided to get the vaccine because it had been a requirement before they were allowed to travel abroad.

Reasons for uncertainty or deciding against vaccination

We also spoke to people with Long Covid who were uncertain about vaccination or had decided against it. Some people worried that the vaccine might make their Long Covid symptoms worse. Jamie said, “I’m really anxious that I go and get the vaccine and it makes me feel horrendous”. Hazeem had initially felt “confused [and] not confident” about getting the Covid vaccine. He changed his mind and got the vaccine after feeling very ill when he was infected with Covid and also after seeing that family and friends were fine after being vaccinated.

A small number of people we spoke to said that friends and family had put them under pressure to refuse vaccination.

Gulsoom’s friends and family told her not to get vaccinated in case it affected her fertility. Although she believed the vaccine is safe, she couldn’t decide what to do. In the end she refused vaccination for the time being.

Perceived after-effects of the vaccine – positive and negative

The evidence on vaccination shows that serious after-effects are rare. Several people mentioned mild and short-term side-effects of the vaccine, such as a fever and flu-like symptoms. Grayson said that he felt unwell for 24 hours after his first vaccine but then “didn’t really get any reaction” from his second.

Jennifer felt shivery and like she had the flu after her first vaccine. She then had a couple of days feeling tired but explained this was not as bad as the overwhelming tsunami of being “Covid tired.”

Some people told us about more severe symptoms that they had experienced after vaccination. Helen said she felt like she “had the virus all over again” after her first vaccine and was “quite unwell” for the following week. Anthony said that a few hours after his first vaccination, he developed a “horrible fever [and] awful headaches [that] then got much worse when lying down”.

A few people felt that they had had more unusual or longer lasting symptoms following vaccination. Iain said that his hearing “went strange” after his second vaccine and his GP sent him for hearing tests. Rebekah said: “I was getting on all right and then I had my first jab and then I believe my PoTS established, but I can’t prove it.” (PoTS stands for Postural tachycardia syndrome and is an abnormal increase in heart rate that occurs after sitting up or standing.) Irene described herself as being “really, really unlucky” because she had restricted movement in her arm after the injection and she wanted to be sure that she knew why this had happened before she got her second Covid vaccination. Michelle described neurological symptoms which coincided with her vaccine injections.

Michelle felt OK after her first vaccine, but after her second she was really sick and spent four weeks in bed. When she got up again, her walking and arm were affected. Michelle thought “something neurological had happened” when she’d had the vaccine.

Both Ada and Xanthe felt that they experienced relapses in their Long Covid symptoms after their vaccines.

Ada experienced overwhelming depression and anxiety after being vaccinated. This impacted her relationships with her husband and children. She said each time she had the vaccine “it messed me up”.

Xanthe said her third vaccine injection “coincided with a huge decline” in her Long Covid symptoms. Her fatigue and feeling unwell after exercise got much worse and she needed much more help from her family.

In contrast, we also spoke to people who said that the vaccine had a positive impact on their Long Covid symptoms. Laurie said she experienced a “vaccine bounce… like the sun had come out” after her first and second injections. Adele initially reacted badly to vaccination but then many of her symptoms improved. Callum’s symptoms got better for a while after his first vaccine.

After her first and second vaccines, Laurie felt it “was like the sun had come out, like the cloud had gone from my brain and I suddenly felt like myself again”. Several of her symptoms have since improved.

About a week after her first vaccine, a lot of Adele’s symptoms got a lot better. Her second vaccine didn’t help as much, but she felt that she had steadily been getting better since vaccination.

After his first vaccine, Callum felt the best he has since getting Long Covid. For a while, he was able to do normal activities without feeling fatigued, unwell or in pain.

You can learn more about what other people thought about vaccinations on the Long Covid in Families website [link to ‘Reinfection and Vaccination’ topic summary] and the Covid-19 in the community section.

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