Huff Post: 'I Sometimes Feel Defeated By My Disability – And That's Okay', 2019, Pippa Stacey

[Trish]

Excellent article in Huff Post by a woman with ME who was told to exercise, and suffered as a result.

I Sometimes Feel Defeated By My Disability – And That's Okay
Our society labels the disabled community as either superheroes or scroungers. The truth is most of us are living somewhere in the middle, writes Pippa Stacey.
By Pippa Stacey

Last month, Sport England and a number of partnering charities launched a new campaign aimed at people living with long-term health conditions. We Are Undefeatable, they called it – making a statement on behalf of the millions of people living with these illnesses in the UK.

As a member of the long-term ill population myself, it seems about time to share my own story of physical fitness and chronic illness: one I don’t particularly like to think about too much these days, but which accurately reflects my apprehensions about this new scheme.
...

https://www.huffingtonpost.co.uk/entry/disability-undefeatable_uk_5d921745e4b0019647ac4b29

 

[Mithriel]

I can't stand this "positive outlook" push for the chronically ill.

I go to an MS therapy centre and about a month ago they got in lots of stuff about a (commercial) programme called "Overcoming MS". The title alone makes me want tp scream. You can't overcome MS!!! It is just a short step from "you can overcome MS" to "you still have MS because you are not working hard enough"

The thing I find upsetting is the step 7 which is how you can prevent your kids getting MS by following the programme steps. So it is no longer a tragedy if your child gets MS as well it is your fault.

The whole programme is just buzz words, vegan diet, exercise, mindfulness and so on.

The NHS is also doing a programme but it is called "Living Well with MS" which is more acceptable but still the risk of blame sneaking in.

My grandson developed type 1 diabetes and was so flooded by how successful you can be with diabetes it began to feel like it was an illness that was just a blip in your life whereas it is important to know how bad things can get as well so you can have a balanced view of the risks and what you can do to minimize them.

Anything else treats us as children who can't handle the truth while putting the blame firmly on the patient.

This post has been copied and some subsequent posts moved or copied to this thread:
Treating or preventing Multiple Sclerosis with lifestyle changes

 

[JemPD]

Well I decided to google it... as I suspected it came back with a wide range of opinions, mainly that since it cant be certain what causes it it cant be 'prevented'... but I also came across this type of thing, which tbh I found rather reassuring that such twaddle was being talked about MS as well as ME https://healingchronicles.com/2013/03/20/yes-ms-is-completely-preventable-heres-how/

From the article

Here’s the deal with the immune system responding by attacking. It’s not a genetic thing. It’s not a random thing happening for unknown reasons. It’s a behavior thing, and guess who determines how your immune system will behave. You do.

Yup, you determine how your immune system behaves. How is this possible? Well one way to look at it is that your cells are really little bits of you that act like you. So to get your cells to behave or not behave in a certain way, one thing you can do is get yourself to behave or not behave in that way. I call this method the micro matches macro method.

What this means for ms prevention specifically is that getting your immune system to be less prone to attacking means getting yourself to be less prone to attack. In other words, to prevent ms, don’t be angry and negative, not on the outside and not underneath either.

I cant tell you how angry this sort of shite makes me If people would stop pushing such woo it's be a lot easier to avoid anger. These messages are so toxic. Anger is a healthy, normal & positive emotion, it drives change. And repressed anger can make one very unhappy.

Sorry this is all a little off topic, I think the article in the OP is excellent & Pippa Stacey can be well proud of it

 

[feeb]

When I first got ME I was talking to an acquaintance who told me that he had also had it as a teenager for three years. I mentioned that I was doing my best to remain positive, and he told me "Don't worry if you can't stay positive all the time. Focusing on that aspect can often be just another ball to juggle."

Pretty much the only useful thing anybody has said to me since developing this (present company excluded!)