Miranda talking about covid and chronic illness

[BonnesVacances]

Miranda Hart has been posting some lovely things on Twitter and instagram lately (not sure about Facebook as I don't have it) asking people to think about those with chronic illness and how life under covid is pretty much what life has been like for a long time if you have a chronic illness.

I hope when life is back to 'normal' for the majority that they don't forget what it was like and can find some empathy for those whose lives will just continue on the same as always.

DD has had ME from age 14-18. I've in particular found it extremely difficult to read posts complaining about schools being closed, missing education, the importance of socialisation on mental health etc. DD has so far missed 4 years of school and during that time we haven't received an ounce of the understanding that this lockdown has afforded people.

On the positive side, we are well-used to isolation, I didn't have a job to lose as I had to give up work years ago to care for DD, and we have already 'dug deep'. DD is having a great time with watching TV shows at the same time as everyone else and tweeting live. She's felt more connected to the world than ever. And last week her doctor managed a phone appointment despite this having been impossible to date.

It's made such a difference not being a minority anymore and having the world more accessible. It's going to be really hard when that all goes away and she's back to being simply housebound and forgotten again.

Well done Miranda!
It's a tragedy that ME is such an overlooked illness yet affects 250,000 people in the UK. Funding for research is pitifully low and far less than for other conditions such as MS which has 130,000 sufferers.
It says a lot that your dd is finding lockdown EASIER than her life before lockdown.
I hear you OP.

Amazing and insightful post OP.

The onset of chronic illness often brings with it isolation, being stuck at home or in bed and losing contact with people, sudden unemployment and financial insecurity through no fault of your own, missed education, further impact on mental and physical health...no end in sight.

I have been disturbed by all the people who take their privileges so much for granted that they are moaning after two days of lockdown, without showing any awareness of the fact that many people are already 'locked down' by their circumstances.

It's very sad how little willingness or effort there is to understand the plight of the chronically ill.

I really send my love to you and your DD and best wishes for her.

Thank you for posting this OP. I'm very sorry for your daughter, especially because of her age. I have a different condition to her, but I can relate to a lot of what you've said. My mental health was relatively unchanged until I started seeing all these posts/memes/articles etc about the pain of loneliness, the "trauma" (although they don't put it in inverted commas) of not being able to live normally, how we should have compassion for each other because life is hard now and on and one.

I've spent YEARS being regarded as lazy, overreacting or whatever else. All of a sudden, after only a couple of weeks (but it actually started after two days, I noticed because I was so shocked), the sort of circumstances that for years I've been judged as incompetent for not being happy about, are major issues. All these people who are finding it lonely are lonely, sure, but they don't know what it's like to be finding it lonely AND judged as incompetent for daring to feel lonely - as a small example. For not just "having a positive mindset" etc. They're not able to have contact with others, but all those others are in the same boat. They're not stuck inside looking out while the rest of their friends, family and the world carries on, leaving them behind. "It could be worse" is a horrible thing to say, but there's truth in that. Many people are far more isolated, for far longer, and they also haven't chosen to live like that, it's a result of circumstances.

I have total and utter sympathy for everybody who is going through a difficult time now - how could I not, I know how that feels! - but I simultaneously feel very angry at how much I've had to suck up and get on with, with zero support from the same people who are so vocal now. I'm trying not to let it seep out, because that's not fair, but it is in me.

I too hope that when their lives return to a semblance of normal that they realise it's not because of some inner strength that they've emerged from the other side, but because their circumstances altered. And on the back of that are more supportive towards those whose circumstances remain more or less the same. Or worse, because their access to the healthcare that supports them has been removed/reduced during this period.

Yes to everything that’s been mentioned on this thread.

I don’t feel that I’m going through any great hardship with everything that’s going on as it’s not that much different to my life before. The only issue I’ve had so far is that people have stockpiled all the cheap and value range stuff in the supermarkets that I usually rely on, so I’ve been having to buy more premium products which is costing me an arm and a leg.

Like your daughter I’ve been feeling that my life has actually been a little bit better in general. At first I felt guilty about it but I’ve seen many others in similar situations echoing my thoughts which has been very reassuring. I’ve got to experience a number of interesting things over the past few weeks which wouldn’t have happened under normal circumstances, like local restaurants offering a delivery service, online live exercise classes etc.

It feels like such a weird twist of fate that in these uncertain times I get to have a life that’s actually better than many others.

Thank you everyone for replying. I'm not especially hopeful that this easier access to life is going to continue for the chronically ill or housebound.

DD had an interview with college yesterday. Via Zoom. I'm not sure she's going to be well enough for it in September but it's important to her that she feels these things are still in reach. It was an encouraging and frustrating call in equal measures.

On the one hand they will offer her a place, despite only having (probably) 3 GCSEs. On the other, they are expecting her to come into college for every lesson, despite the fact that they're currently delivering the lessons online and so clearly have the technology and the wherewithal to at least offer it for days when she's not well enough to come in.

DD has improved so much over the last 12 months and we had devised a 'rehab' style plan for her which involved building up her exposure to the outside world, new people, activity, mental stamina. But of course this lockdown has put the brakes on the majority of that, and in some cases it feels like she's gone backwards. It's hard to stay completely positive, but without some element of it, we'd have lost the plot years ago. So just hanging in there.

It definitely helps when people like Miranda show that they "get it" though. It shows a wonderful level of compassion and if it was possible to love her anymore, I would!