Shani Dhanda, 33, is a multi-award-winning disability specialist and entrepreneur from Birmingham, born with a rare genetic condition that affects 1 in 15,000 people. Her condition is called Brittle Bones, and due to this, she has a short stature of 3’10. This also means Shani has developed other conditions, including having reduced lung capacity, which puts her into the vulnerable category. Being a South Asian woman means an extra layer of vulnerability and risk.
“Six out of ten Covid deaths were those of disabled people, so I feel lucky to be alive.” Said Shani in my recent interview where we talked about the long-term effects of Long Covid and how so many are suffering from this illness.
Shani started shielding a week before the national lockdown and took it seriously. She didn’t go out for anything – not even for exercise. “I was being extra careful and took every precaution possible as I wanted to protect myself.”
In May, she felt she had a sore throat and thought nothing of it. She said: “It felt as if something was stuck in my throat or as if my throat was inflamed.”
A week or so later, she experienced some stroke-like symptoms, the right side of her body went numb, and the right side of her face had drooped down. It wasn’t a stroke after being checked over, but she had a routine Covid swab at the hospital. It was only then Shani was told she tested positive.
It took at least 3-4 weeks until she started to feel better. She explains how she had no energy, felt fatigued and found it hard to even get out of bed.
“I remember when I had Covid, I used to go to sleep thinking would I wake up the next day? It was a horrible experience, and I wouldn’t wish it upon anyone.”
In December, Shani started to feel tight chest symptoms and shortness of breath and just thought it’s linked to a chest infection as she sometimes gets in the winter, and not related to Covid. She went to see her GP who confirmed it wasn’t a chest infection, but she experienced these symptoms because she had long-covid.
“Having long covid and a rare condition means everything is much more complicated with managing my health.”
It’s now approaching a year since Shani has been shielding and long-covid is affecting her health in many different ways, now realising it’s something she has to live with getting on with her work.
She is still living with symptoms such as a sore throat, swollen glands and feeling fatigued. With headaches, swelling of limbs, brain fog – it takes her longer to do things. She also finds she is getting breathless and is experiencing tight chest pains.
Many people suffering from “long Covid” are still unable to work at full capacity six months after infection, a large-scale survey of confirmed and suspected patients has found.
Since last year Shani has been shielding away from her family who are all key or essential workers. “I didn’t see my friends at all in 2020.”
She is worried about the new variants and doesn’t want to get Covid again so has been extra careful and has continued to shield as per the government guidance.
“I have to say no to things and take time out to rest”. Walking up a flight of steps leaves me breathless. Shielding for a year and having health complications takes a toll on my mental and emotional wellbeing.”
Although she has gone through a turmoil of events this last year, Shani said she is very grateful for technology as it allows me to continue to stay in touch with my loved ones and to be able to work remotely.”
“Having an employer who is supportive helps a lot” she said.
She said: “Getting covid isn’t like catching a cold. It can affect you long term. It is an unknown condition, and no one knows the future implications or how it will affect people’s health.”
Living with a lifelong pre-existing condition, she knows that her condition will deteriorate as she gets older. She has known this from a young age. She said: “I’m somewhat mentally prepared. I wasn’t prepared for my health to deteriorate so soon and all the unknown things that come with long-Covid.
“I have had a lifetime of engaging with medical professionals, so I know how to navigate the health service, which I recognise as a privilege. Many people have not been in this situation before and have become disabled overnight.”
Shani will get the vaccine and urges everyone who hasn’t had it seriously consider it, do you own research, and choose what is right for you based on your circumstances and choices.
Feature Image Credit: Andy Fallon