In Memory of Nisha.

[sianrecovery]

My friend Nisha hung herself a year ago today. She was beautiful, funny, intelligent, and she had ME. She was in constant pain, and she was pretty ill. She had ME. She tried a lot of stuff, none of it had (yet) worked for her. In the three weeks before her death, she saw a neurologist (unusual plaque formations in the brain, not what you expect in a woman in her thirties, but nothing to worry about....), a gastro-enterologist, the endricrinologist who leads the local ME service (yes, we can offer you CBT. Its the only thing that has an evidence base) and a mental health team (you're depressed - heres some antidepressants) and her GP. She was in severe shoulder pain no one could explain. Yes, she was depressed - because not one of the professionals who might have helped her, did, because she saw no way out, and because many of the people closely involved in her life had told her to pull herself together, stop malingering, and get back to work.
I dont post stuff like this much, but I wanted to acknowledge her death. I was in my GP's surgery yesterday, with the nurse trying to get blood - and the GP sent a message to me via the nurse she wasnt going to run the tests she had agreed, (viral studies, CD4 and CD8) because they had been at my suggestion, and perhaps I should return to whatever private clinic was treating me.

Having ME in the UK, I have bargain basement expectations of any medical professional in the NHS helping me with it. Still, as I left, I thought of Nisha and the crazy making visits she endured to the same people.

She deserved better.

Thank god for PR and knowing I'm not alone.

 

[Enid]

Speechless at the arrogance of your GP Sian - I know it's a lottery here - can you change - something my brother a Neurologist told me to do and I did. Not getting any tests above the basics though but treating thyroid/pain/osteoporosis problems. Sad to say that the medics responsible for Nisha have this on their hands.

 

[snowathlete]

I wish I could say something useful here about this, wish I could make sense of it, but I can't. All I can say is that it's good to acknowledge her and what she went through, what she did because her choices were so few. I can understand why she did what she did, I wish she'd have had better treatment and better options. I'm gutted that she didn't.

I hope one day she gets recognised the way she deserved.

 

[justy]

Thank you Sian for telling us about your friend Nisha, and her sad death.
I think most of us here in the UK have endured the kind of 'treatment' you describe by the NHS. It makes me so sad to think that this can sometimes be the result. For me, 17 years of being ill before a diagnosis of M.E that i had to seek out and pay for. Now even with the diagnosis, i recieve no treatment and no care.

Thinking of you, as you remember your friend.
Justy.x

 

[Don Quichotte]

First, she definitely deserved better, and so do you.

Second, physicians are people and as such they come in all form and colors.

Some are ignorant and arrogant, others admit their lack of knowledge but do nothing about it, and yet others are ready to explore with you every possible avenue, realizing that lack of evidence-based diagnostic and treatment approach doesn't mean that there is none which can be found.

It is very unfortunate, but many relatives and friends tend to trust the medical professionals more than they do the patient.

There is this fallacy that physicians are "objective" whereas patients can only have "subjective" experiences. So, if so many "excellent" physicians could not find the cause of your illness, than clearly you can't be ill. You are either doctor-hunting, malingering, have significant emotional problems you refuse to "admit" or even plain faking your illness for some obscure reasons.

When in reality both physicians and patients are objective and subjective, both have knowledge and understanding , both have misconceptions and both can be right or wrong. When it comes to poorly understood or rare disease, more times than not the patients are the ones that know better. There was a large survey done by "rare disease UK" which clearly showed that.

It is not rare for patients with such diseases to see numerous physicians and it may take a significant amount of time until their illness is properly diagnosed and managed. Sometimes a new discovery, a new diagnostic test etc. can lead to answers where none seemed to be before. Sometimes they are the ones that find the missing lead.

You just have to keep on searching for answers and learning as much as you can about your illness and the way it effects your life, while continuing to search for those physicians who will be ready to become your true partners in doing so.

During very hard times, when it seemed like there was no hope, I would remember the story of Pandora.
How the box which was full of misery and suffering came together with hope.

 

[Carrigon]

I'm sorry about your friend and how you're being treated. My heart breaks more and more with each story I hear. And I get treated the same way. I'm even judged by my looks by other people who are disabled in the building I live in. And I have to deal with it all the time. They think because I look okay that there's nothing wrong with me. It's just so awful.

All I can say is, if you watch the Alex Jones channel on Youtube and listen to the InfoWars news on there, you will understand more of what really happened to us all. And why it is still happening.

 

[Desdinova]

I'm sorry for your loss sianrecovery. It's sad that for many it takes either witnessing things close and personal or experiencing it for themselves to believe something. I remember going through the 90's with IBS not knowing or having a clue what such a thing as IBS was. (Doctors told me "there is no such thing with all those symptoms".) I didn't hear the name IBS until 97 and 98 when Kelsey Grammer and his wife did a public awareness commercial.

Even then I had no idea it was what I was enduring or why the doctors treated me with suspicion, annoyance, disgust and on occasion rage not until 99-2000. Never dreamed I would be going through similar experiences starting in 2006 to present. All we can do Is carry on the fight, and try to educate others where and when we can. One day people will look back in disbelief at the way those of us with these hidden disorders were treated.

 

[maryb]

So sorry to hear about Nisha, it must be a very sad anniversary for you and the rest of her friends and family. What a waste of such a young life.
The brainwashed behaviour of the doctors especially in the UK is astonishing, none of them are prepared to step out from the line and treat what they see in front of them. Morons the lot of them.

 

[Googsta]

((HUGS)) Sian....it saddens me deeply that patients are continually made to feel they have nowhere left to turn.

DonQ, excellent post. Thankyou for putting it all so eloquently.

 

[Daffodil]

this hits me hard. she was indian like me

i'm so sorry

 

[taniaaust1]

Sorry to hear of your loss and that she had was left with no other option then that.

There really should be a world ME memorial day each year to pay respects to all those who have been lost due to this illness (for both of those who felt suicide was the only option they were left with and for those who this diseasse has killed in other ways) .

They never should be forgotten.

 

[Nielk]

Thanks for sharing your pain. We should not shy away from making these atrocities public. You have honored your friends soul today by mentioning her and exposing the horrors of the medical system which left her (in her mind) with no choice.
I'm sorry and I'm also sorry for the way you are being treated. It's unacceptable.

 

[anniekim]

I'm so sorry about your friend and the appalling way she was treated. You've been a good friend by honouring her....

I live in the uk so know too well how little support and treatment is on offer here. Thankfully those who I'm close to, my family mainly, have been very supportive. It must be awful to not have support from your loved ones

 

[Garblad6]

Sorry for your friend. Hope she is good somewhere int the universe now,

 

[msf]

Sorry to hear about your friend. I have not had ME long, and so I have not had that much experience dealing with the NHS, but from what little experience I have I can already see that I will never get any useful or even a diagnosis from the NHS, and unfortunately I don't see that situation changing anytime soon. The Times have been running a series of articles about the state of the NHS, and some of the revelations have been truly depressing. One that stuck in my mind was that the survival rate for cancer patients in this country is similar to that of cancer patients on the Continent in the 1990s. If the NHS is that far behind in something like cancer, it seems quite unlikely to me that we will see much progress in the treatment of poorly understood diseases like ME.

I would like to suggest that you all voted for an alternative to the present health system, but thanks to our electoral system and the media's coverage of health issues that is not possible in this election.

 

[sianrecovery]

I still miss her. Travel in the light, Nisha. Free at last.