@veritysmart
This is the hardest part of being disabled, you are alive but you’re not living. So many barriers and so little compassion. You’re in an almost constant state of grief at the life you’ll never live and the potential lost forever. I wish able people knew how much we would rather join them, be part of our community and be financially independent. No one chooses this and it’s never easy. It’s full time and perpetually exhausting.
@mrpinkpaws
So sad to watch Darren's story. I developed a post-viral syndrome from a dengue infection in July last year and the absolute carnage it wreaks on your mental health is really difficult to comprehend if you haven't had a long-term illness. Almost overnight you have to accept that your life as you knew it is over. Darren, if you read these comments know that you are doing an amazing job and I'm sure your kids are very proud of you. Stay strong and keep going - you can recover.
@bbl8101
I have been chronically ill and disabled since a Covid reinfection in May 2022. Lost everything, wouldn't recommend. Please avoid reinfections, it is not worth it. And I fell ill as a completely healthy 20-something year old.
@Talentedtadpole
The Guardian needs to do more coverage of disability and what is being done to these groups who have no representation and have been shut out of society. Many say that how they are treated is worse than their disabilities. The situation is scandalous and dangerous and the government are gearing up to make things even worse.
@TheElmospoon
I have ME/CFS. I find it upsetting an infuriating that ME/CFS research, healthcare policy etc could have been a strong starting point for understanding and treating long covid. However, due to me/cfs being so underfunded, and stigmatised this was not the case. I worry that people with long covid worsen due to being recommended the same recycled therapies like grades exercise therapy (or something similar) when ME/CFS patients have known for decades that this is harmful for us and finally after a lot of campaigning the research that 'evidenced' this has been proven to have been bad science and research with (amongst other things) the parameters for recovery being changed to make it seem more effective (PACE trial). The only upside here is that organisations aree joining forces and some knew to research from day 1 as it was obvious something like this would happen.
@twistagain1964
Well done for highlighting this situation that’s still affecting thousands of us. It is particularly difficult as it’s not specifically diagnosed/understood and to look at a lot of sufferers seem OK at first glance. Keep focussed on what you can do and all the best for the future.
@jackpayne4658
I had Covid almost exactly two years ago. I felt really ill for about a week, like serious flu. I quickly recovered, but soon noticed that I was sleeping 9 hours per night instead of my previous 7. Also, I no longer felt like going for walks - I had previously walked most days, often 10-12 miles. Next, I started feeling nasty aches, starting at my hips & moving down my legs. Until Covid, I had enjoyed excellent health and felt much younger than my age (now 74). Over the last 2 years, these symptoms have come & gone almost at random. The overall trend is towards feeling better, but very slowly and with numerous setbacks.
@Blimp95525
Got my Covid in July 2022 and was subsequently diagnosed with PoTS. Used to do 100 mile bike rides weekly, now I can't leave the house.
@wzupppp
Exact same as me, exact same time of onset (sep2021). Constant heaviness, never waking up refreshed, feeling sick all the time.
@gavinandrews9026
I'm coming up to 5 years with this. Very little sympathy from medical professionals, or family, or colleagues.
@kasperkappin
I was infected in September of 2022. The acute infection hit me pretty hard. About a month and a half after my initial infection, I still wasn't feeling fully better. I was sleeping a lot more, finding that sleep was never fully restorative; and I was having trouble thinking. I tried returning to workouts, but found that just a single workout of even moderate intensity would wipe me out for almost a week. (I was a gymnast for 13 years, then did track for a couple years, then returned to calisthenics and hand-balancing. Just before infection, I was working out 4 times a week on average.) I didn't understand this illness, and was trying to treat recovery like any other viral illness I'd experienced in the past. That is, I was just trying to push past the malaise. I decided to become quite physically involved in the UC graduate student strike that took place in November that year, doing many hours of picketing each day for about two weeks. It was grueling -- hot, sunny, and my symptoms were getting worse and worse. Heart palpitations, racing heart, pain in my chest, difficulty breathing, intense fatigue and brain fog. I didn't know what was going on. So I just kept on going, until the pain in my chest was to intense to brush aside. In December, I was diagnosed with long-COVID. Fast-forward 1.5 years to May 2024, and I was diagnosed with POTS and CFS. (Although, I consider myself one of the lucky ones, as many folks have to wait upwards of 5 years or even more to obtain such diagnoses.) It's been over two years since the initial infection, and I'm still suffering greatly from it. My greatly reduced capacity for exertion is of course quite annoying, as is the PEM. But what pains me the most is the brain fog. I was (am?) a graduate student, and my mind's integrity was absolutely central to the life I was building for myself. It can be really hard to explain what brain fog feels like. It's certainly uncomfortable, if not actually painful. It feels somewhat like the cognitive impairment of a hangover. For me, word recall is compromised. My short-term and long-term memory are both compromised. My executive function is compromised. My capacity to run through and understand arguments is compromised. My capacity to express my thoughts clearly is compromised. All of these I need for my work. The best metaphor I can come up with for how brain fog feels and affects me is the following. Trying to think is akin to struggling to walk through mud. The deeper the mud is (the worse your brain fog is), the slower your walk (think), and the more you have to push and exert yourself in order to get to the other side (complete the cognitive task at hand). Even when the mud is quite shallow, it still slows you down. It is still harder to get to your destination. But these days, I'm happy if the mud is shallow, rather than deep. One final thing I'll say: long-covid, like many other chronic illnesses, is invisible in several senses. In addition to the sense that Darren mentions in the video -- namely, that we're invisible because we're largely housebound, thus never seen by the healthy public -- long-covid is invisible in the further sense that to someone who doesn't know anything about chronic illnesses, I might look perfectly "healthy."
@luciedale1613
What a terrible shame, but as you said Darren, invisible, it's so important that you made this film to help us understand your reality, and that of so many others. Thank you, blessings
@Nill2323-l8s
I am still on lockdown because public health won’t acknowledge I am high risk. Long Covid has been impossibly difficult. I can’t keep doing this. Thank you for this coverage. May there be more.
@ithacacomments4811
My friend got COVID a second time. Her doctor gave her a antiviral med. She had long-term shortness of breath from her first infection. The antiviral not only helped her to recover quickly but she felt much improvement in her breathing issue! She feels that her body was somehow holding on to the first infection and the antiviral got rid of it.
@963ag
I am dealing with this right now, despite being very cautious with my health - hygiene, nutrition, distancing, masking, etc. I am immunocompromised, I was affected as a dependent by the Camp Lejeune toxic water contamination that has killed and sickened hundreds of thousands of people over decades. This has absolutely devastated every aspect of my life - emotional, financial, relationships, and of course my ability to be the once athletic, active person I was. For those who are housebound, and severely disabled - we are indeed invisible and mostly ignored by society at large.
@edwardashton3864
So hard, for anyone struggling with this.
@Talentedtadpole
We all need to pay attention to how sick, elderly and disabled people are treated. Their rights are YOUR rights. A 2016 UN report found the UK government had committed 'grave and systemic violations of disabled people's human rights.' the situation is now worse. This is playing a key part in many of the destructive things that are happening in this country.
@soggymoggytravels
Thank you for bringing attention to the missing millions.
@johncook9595
I am having the same issues and my Doctor believes I have Long Covid. I have never felt like this before and I am looking into retiring because I can't do my job anymore.
@Sassy_Alaskan