Charlotte
Charlotte is 29 and lives with her partner and 2 children. Ethnicity: White.
Charlotte got Covid in October 2020 and say she was the “poorliest” she’s ever been with a virus. Charlotte feels that having Long Covid has had a big impact on her relationship with her children. Charlotte describes this as “heart-breaking.” Charlotte was interviewed in November 2021.
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Charlotte got Covid in October 2020 and say she was the “poorliest” she’s ever been with a virus. During the first 6 weeks she describes fainting, being really breathless and suffering with chest pains. Around the end of the year, Charlotte was still struggling with breathlessness, lots of nerve pain and describes having been practically bedbound for two months.
Charlotte attended a Long Covid Clinic and was diagnosed with POTS (Postural Orthostatic Tachycardia). She was also diagnosed with Ehlers-Danlos syndrome, which she said she probably already had pre-Covid. Over time Charlotte has seen a number of private health care professionals and has continued to suffer from a range of symptoms (e.g. blood in urine, blisters on her feet) which she was told were probably related to Long Covid.
Charlotte feels that having Long Covid has had a big impact on her relationship with her children. She says before, she used to do everything for them but that now “they don’t rely on me the same.” If they need somebody at night time “they don’t shout mummy anymore, they shout daddy.” Charlotte describes this as “heart-breaking.”
Charlotte’s illness has also prevented her family from doing things together that they used to enjoy like going on camping trips. She feels like her husband has had to take over a lot, and that “he’s had an equally tough year….just in a different way.”
Charlotte has lost touch with a lot of friends like the mums from school, because her symptoms stop her from being able to socialise: “I suppose from their point of view I’ve like disappeared.”
Charlotte was willing to try off licence drugs which her private specialist had prescribed.
Charlotte was willing to try off licence drugs which her private specialist had prescribed.
It’s interesting that you had a different experience with the more private doctors.
I think they’re much more willing to listen and take a chance on medication. Nearly every medication I’ve got is prescribed off licence. All from private doctors.
I have, I’ve seen improvements with them like I’m not I’ve not fainted since I’ve been on the tablets. I’ve not, my legs aren’t blue anymore. I can move them again.
Yeah. Was your family supportive of you kind of trying those more, I guess, experimental treatments?
Yeah. I think because my mum had MS and went on a clinical trial and it was amazing for her, my parents were always, you know, of the opinion try things. You know, try it. I felt like I couldn't get much worse. What did I have to lose? To be honest, I just want to try anything to get better.
Trigger warning; Suicide: Charlotte was taking strong antidepressants and felt “numb at the minute”. She had some suicidal thoughts.
Trigger warning; Suicide: Charlotte was taking strong antidepressants and felt “numb at the minute”. She had some suicidal thoughts.
Do you feel kind of isolated from your life?
Yeah, massively. I’m on some strong antidepressants. I were, in the summer holidays I were suicidal. I were really and I didn't, I’d never experienced it. I’d worked with people who’ve suffered with their mental health, as a nurse. And thoughts were coming into my head, telling me, there’s no point in me being here anymore. And I thought, I need to tell somebody about this. And I didn't have any control of them. So, I started on antidepressant which helped and then, after a bit, it came, they came back again, and I were like thinking of ways that for it.
We’ve got a swing set in the garden that’s got ropes and stuff and I were imagining thinking, when they all go, I’m gonna strap myself up on there. I couldn't have done it anyway because I couldn't’ve even got there you know, I wouldn't have had the strength, but I knew that both feelings were not normal and so then they upped my antidepressants. And at the minute, I would just say, I’m numb. I’m numb. Until I talk about it like this, I don’t think about it.
Charlotte described lots of worries - whether she would get better, and the impact of her illness on her family life and her job.
Charlotte described lots of worries - whether she would get better, and the impact of her illness on her family life and her job.
Yeah, I worry if they get Covid and be like me. Because there has been talk of these like POTS and the things, they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if for years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.
Charlotte compared the NHS and private doctors that she had seen. She felt that private consultants had “been more willing to put their neck on the line and say, ‘I think it’s this’”.
Charlotte compared the NHS and private doctors that she had seen. She felt that private consultants had “been more willing to put their neck on the line and say, ‘I think it’s this’”.
And so I saw a lot of doctors in hospital. I saw a rheumatologist because I’d got rashes and blisters on my feet and my legs were poor circulation. And she was the one who diagnosed me with Ehlers-Danlos syndrome. And I saw the cardiologist again in hospital and a neurologist and none of them could really give me any help other than other than the wheelchair. And so, when I came out, I were really hopeless. And we, I would Googling it with my husband about the circulation in my legs. Looking at the Ehlers-Danlos syndrome because that’s what I was told it was. And it were coming up saying, POTS. So I thought, ‘Oh that feels more likely ‘cos it feels, to me it just happened after Covid and the POTS was post Covid.’ So, I paid to see a POTS specialist cardiologist about my legs to say they’re blue. Does he think it’s linked to the POTS. And he said, “Certainly is.” Started me on a tablet. And then reviewed me like every six weeks after that.
What was it about trying to access care through the NHS that meant that you chose to go private?
The specialist knowledge and the, the doctor, the doctor that I was seeing in the NHS was saying and still say, “We don’t have any evidence. We don’t, we’re not authorised to give you treatment. We know this is all very new. There’s nothing we can do.” Whereas the private doctors have been willing to put their neck on the line and say, I think it’s this and I think it’s that. And I’ve had to accept they might be wrong. They might be guessing. But they’re the only ones who’re trying anything or suggesting anyway that I can get better.
Lots of the doctors or every doctor that I’ve seen on the NHS have said to me, “You seem like you've got POTS or Ehlers-Danlos syndrome or Long Covid. There’s nothing we can do to help.” The cardiologist gave me some tablets and said she’d review me in six months and then that meant I were left at home for six months, in the wheelchair, poorly. So, we just, just for speed really to be seen and to get options for treatment.