Do you find it difficult talking about your symptoms with family, friends or other support networks?
We know people with Long Covid struggle to talk about their symptoms and feelings with family, friends and others in their social circle. This can be for a number of reasons.
Sometimes people don’t want to talk to people about their symptoms because they:
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are unsure that their symptoms are Long Covid
Because maybe I’m not convinced myself that I may have long-Covid. Like I said to you is this just an age thing, I don’t know. How do you go about diagnosing long-Covid? Are the symptoms that I’ve just given to you enough for me to say that I have long-Covid? I don’t know.
Male, aged 50-59 -
are worried about other people’s reactions
I just know socially if I were to say, look I’m experiencing long COVID and this is why I’m not really socialising as much or doing as much, like I know that friends wouldn’t directly say anything but I can imagine that there might be some judgement there, unconsciously or otherwise.
Male, aged 30-39 -
believe they should have got better already
But as I said, at work or family and that then I don’t really talk about it, because especially family it is a case of you should be over it by now
Female, aged 50-59 -
feeling embarrassed or shame
And I and I also think you know that thing you said about not wanting to be a burden on others, you know, that. So, that’s just in our culture, isn’t it? You know that you try to do the best that you can, and there’s some, I don’t know, there’s something shameful about being unwell or being, you know… I don’t understand it but, I don’t, I don’t fully know whether it’s a culture thing because in my family, it’s not like that. So, people talk a lot about their illness. But you know, I feel like that, and you know, you’ve said that there is something about that in the Asian culture and I, and I don’t know whether when people come here, they feel more shame about being unwell. I don’t know. You know, I don’t know what it is, but…
Female, aged 50-59 -
fear people will think ‘it’s all in their head’, they are exaggerating or being lazy
i’ve avoided social events and anything and I’ll be honest the one time, Jubilee, a friend had a little barbecue it was the first time. I mean, she had a birthday in March, a barbecue birthday in the backyard, and a sister that she’s a close friend and they insisted I come. It was just about five of us that does everything together normally and I didn’t go. I mean, I know she’s upset but I won’t say it’s Covid or anything like that. I’m just like, ‘I’m not feeling well.’ And that’s it. Yes, because I’m sure people are tired of hearing about Covid because she believes Covid is just like the flu.
Female, aged 50-59 -
do not want to create burden for others
I found myself withdrawing from others… very concerned about burdening others.
Female, aged 50-59 -
fear of being discrimination or stigma from within communities
…In our culture and community, people don’t understand. You always have to pretend. For example, if extended family have to come and if I said no, they would make accusations and say, ‘Oh, she’s moody.’ They would make nasty remarks about me…’
Female, aged 50-59 -
not wanting to be seen as unwell or as someone who needs to be cared for
I’m very careful who I tell about the symptoms because there again I come across as this boring person that’s got something wrong with them so you don’t always want to come across like that person so you try to put on another persona
Female, aged 60-69 -
fears others will think Long Covid is not a ‘real’ illness
I feel a little weird about it, because it’s something we talk about but don’t really have a very-, you could talk to one person who goes, ‘Yes, it’s definitely a thing.’ You can talk to another person who goes, ‘No, this is just something that is made up, we have no clear markers for it.’
Male, aged 40-49
You will find examples of other people’s experiences by clicking on each point above.
You can read more about Long Covid and stigma in this article: Long COVID stigma may encourage people to hide the condition.