That’s Not My Age

Good news about vaccines this week which will certainly make a difference to our locked-down lives next year… Despite this, the number of people reporting disturbing, chronic Long Covid ailments has been growing. That’s Not My Age reader Debs Chowney, an Employment and Training Officer for a Hampshire Housing Association, caught our attention with her comment about hair loss (on the recent thinning hair feature). We thought Debs’ story might serve as both support for those suffering from Long Covid and an inspiration for others dealing with similar hair loss due to stress or illness. Experiencing the now, very typical, trajectory of the disease, Debs felt a bit achy at the end of March 2020 but found the next day the virus hit her hard, so much so that she couldn’t even lift her body out of bed. A loss of taste and smell quickly followed, and then came a debilitating cough. “I had a couple of coughing fits where I just could not catch my breath. And I was told by the doctor that, because I could speak to him on the phone, there was absolutely nothing they could do and I would have to ‘put up with it.’”

Debs wasn’t on any medication, with no underlying conditions and she says she’s always been active, “My garden is my version of a gym. I’ve got a big garden and I don’t garden pretty, I garden hard.” But even so, “if, at that time I’d been offered access to a test, I couldn’t have gone. I couldn’t have walked to the car, even with assistance, because I just didn’t have the energy to, or the ability to sit up in the car – it was that bad.” She rallied on day eight only to relapse again. “I’m a very pragmatic person,” she says, “a very, logical, hands on sort of person. My husband was really frightened, and to everyone else it looked very bad. So I began thinking, ‘if I go to sleep, I might not wake up’.”

Over a fortnight she also experienced delusional night fevers and other – now familiar – symptoms like swollen purple feet. “Day 13-15, the cough stopped. I hadn’t eaten for a fortnight really. Everything tasted like I was licking a penny, metallic, but nasty. I could smell like something was burning around me, all the time. It would come and go, along with odd shooting pains like someone was stabbing my feet.“ She was still experiencing breathlessness, however, so she rang her GP and they gave her antibiotics. “They didn’t want to risk that I had a chest infection,” she says. “When I breathed in, I could feel an odd sensation in my lungs. It felt like they were wet – they’ve been mentioning something called ‘ground glass syndrome’ – I could ‘feel’ my breathing.

Keen to find others in her circumstances, Debs joined a few Facebook Groups – like The Long Covid Support Group – which currently has over 25,000 members and the Covid-19 UK Support Group. They included medical practitioners, GPs and research scientists who had had Covid and were experiencing the same symptoms. “A lot of people, in this group are women,” says Debs, “because women tend to go looking for a community to share and get advice. The smell thing and the taste thing, was already being highlighted there long before it became accepted in the UK as a symptom. Luckily my work was very supportive. I didn’t set the alarm clock. If I needed to sleep, I slept. If I there was something that I needed to eat, I would eat it. I was taking small bits of exercise – small walks. And sometimes I was OK and sometimes it was a bit much. But I took it easy and built it up. I was listening to what my body was saying.”

About six weeks after the initial infection, Debs started to experience hair loss. “My hair started to fall out in clumps. I did some blood tests. They checked for thyroid, liver function, blood sugar, etc. and they were clear. They didn’t think it was the antibiotics.” Her doctors admitted that Covid-19 was so new to them that they were unsure what to expect next. Through her research Debs learned that hair grows in cycles and she attributes this to the delayed hair loss. “It was similar to Telogen Effluvium,” says Debs – a form of temporary hair loss that usually happens after stress, a shock, or a traumatic event. “I did a bit of Googling, as you do, and if you’ve had a high temperature, it can do that. People [on the Facebook Groups] were saying, “Don’t worry, it starts to grow back, so please, bear with it.”  I thought, ‘OK, it might stop.’”

Before Covid

“Because I had really thick hair and it was down to my shoulders – like a long bob – other people said it didn’t look bad, but you could see right through it. It was really scraggy and ratty. I think it was my body saying, ‘we don’t need your hair for the minute.’ And there are a lot of people, a lot younger than me, reporting [the same thing]. The real issue was it wasn’t stopping. So, two weeks, four weeks… I thought, ‘if this continues I will have no hair at all.’ And it did go on probably for up to eight weeks, quite significantly. It frightened me.” Despite not being a vain person, it initially knocked her confidence. “My hair was always, red and long and thick and glossy, and for me it was really important because a lot of your identity is about how you present and make the best of what you’ve got. Being older, I was allowed to grow up without the pressures [of appearance] that they feel today. But to lose your hair, as well as feeling awful…”

“When I put clothes in the washing machine, I’d take the clothes out and there’d be a ball of hair. I already had a trail of hair in my home, so you could tell where I had been. One day I’d dropped one of my earrings and I hoovered it up. When I put my hand in the cylinder to get it out, a ball of hair – like a ball of knitting wool – came out. That freaked me out. Even though I knew I’d lost a lot of hair, when I saw this ball of hair I had a bit of a moment.”

Eight months later, Debs largely feels fine, “The only issue, that I am aware of is an on and off ‘skin tingling’. Mainly legs and feet, a bit like they are sunburnt and it goes on for hours and then just stops! Goes away for days and then comes back at odd times. It is something I share with others, but not the worst result of the virus that keeps giving, and I’ve had it much less recently, so I think it will go. It’s not something I stress over. My sense of taste has changed too, not radically and some things do smell different.” I see Covid as a revolution, that has caused rapid evolution in the way we are working and living, let’s see what next year brings…

Are there any special treatments or shampoos for Long Covid hair loss?

“One thing that was recommended was Minoxidil. But it is not available on the NHS for hair loss and it is £40.” After hearing about some side effects and the fact that she would need to continue its use indefinitely to retain existing hair, she decided against using it. “And so I thought, I’m just going to wait and see – let nature do what nature does. And I just got a bit more relaxed about it. I’m not a great one for taking medications that don’t need to be taken.” Eventually, it did slow and stop. “One day I noticed there was nothing in the comb, and there wasn’t any hair in the shower tray. It must have done what it needed to do, and lost as much as it needed to lose.”

Debs has become quite philosophical about it. “I think time can be a great healer for things like viruses. And I think we are very hard on ourselves when we get ill. I read an interesting article about the stress on people to look like they are super employees and many people go into work often sicker than they should be. We are not very tolerant of allowing people to recover from things. I think that doesn’t help. We talk a lot about well-being and mental health and then we drag people out of their sick-beds to do daft things.”

Her saving grace was having a great hairdresser ( shout out to Janice at Focus on Hair, Whitchurch). “She’s an old-style trained hairdresser. I don’t go to a fancy salon. The town I live in has a large elderly population, so, if a woman presents, and she’s older and she’s got fine hair… my hairdresser knows how to cut, dress and deal with their hair.” So when Debs explained her ordeal, her hairdresser reassured her immediately. “She said, ‘I will thin this out – and you may think that it’s counter-intuitive, but it will lay better. And it’s wavy so you can fluff it up –  that will make it look like you have much thicker hair.’  My long hair had big gaps, you could see right through it and so she was absolutely right. The minute she cut it, I felt like my hair looked so much better. And I actually got myself some hair wax, Boots Essential Curl Cream, just to give it a bit of texture. It was a real confidence boost.”

“I’d say it took about 16 weeks before [almost] everything disappeared. Now that they realise that Covid-19 is an inflammatory disease and not just respiratory, it has added greatly to the research. “

What other advice would you give TNMA readers?

“I went out and bought myself one of those blood oxygen things, because they say it is useful. If I had that, and my feet were purple, maybe my blood-oxygen was bad? I’ve got that for the first aid kit but it is something I wouldn’t have thought of before.

Also, just to stop and look at the positive of it. Which sounds weird. It did freak me and worry me, but I thought, take step back, have more perspective. Be a bit more kind to yourself, just give it some time. Being in lockdown, no one knew anyway. Not being as visible or public was a blessing. Because of life experience, I know that when you stress about something you will become ill. When you don’t give yourself enough time for you, when you don’t stop… Just. Stop. Take a breath. Give yourself time to repair, to heal. And I absolutely believe that when you are not well, it’s not wrong to be a bit selfish. It’s not wrong to take care of yourself. People rush around taking care of everyone else… No. Take care of you.

If I’m happy I do better. “I like my hair shorter – it certainly dries a great deal faster! I said to Neil, my husband, ‘If I get bald spots, you know what, I’m going buy more hats,’ she laughs. “I’m just going to be that woman who goes out everywhere with a fancy hat!”

Alexia Economou is a design and culture journalist, and regular TNMA contributor @thedesignfeedTW

If you have thinning hair and would like to share your experience and advice, we’d love to hear from you. Please get in touch by emailing: [email protected]