An interview with Rachel Horne who wrote the extraordinary blog post “The Kingdom of the Sick” (14th July 2020), which in my opinion is almost certainly the most well written and insightful piece on this blog.
CoI: nothing relevant in relation to this blog post
I agree with most of that, I personally found the OMS community really good in the first few years. In retrospect probably a bit too distrusting of medicines, but otherwise great to have hope anyway.
Really enjoyed watching Rachel too. I could watch her talk about these questions for hours! When she talks about doubt, I think this can also be suspicion from others. People can be suspicious that you don’t look ill. I’m lucky to have GP that doesn’t think I’m a complete hypochondriac but others are not so. I wonder if there is a political element to this too? The government have been guilty of pushing a mistrust for people who wrongly claim benefits etc. Or maybe it’s just human nature to make these assumptions. At least once you have a long term illness, you are generally a better person towards others 🙂
With the OMS what puts me off (even though I know the diet benefits a lot of people) is that some of the community are rather cult like in their approach.. it comes across quite forceful at times. Online there are so many communities like this for various different dietary / lifestyle approaches, I think it preys on the desperate in people and becomes a bit obsessive. Which is not so helpful mentally, in my opinion anyway. Like you said as well, there can be a lot of distrust and wrong information posted regarding medicine too. It’s such a slippery slope online. It plays on people’s fears in the same way as the anti-vaxers. It’s like people want to go backwards with Western medicine and science.
I do not disagree, ultimately you have to take responsibility for your own education. I have ended up getting HSCT but I definitely benefited from the lifestyle change OMS semi-forced on me.
But yeah, beyond being a guide, the community can be a bit toxic.
In the end it should really just be another resource.
Sorry I am a bit late to replying to this… how did you find HSCT? I hear so many different things… Hope you are feeling the rewards now – as I understand it is a v tough treatment to undergo.
OMS – v much agree with you,
Take care
New “baseline MRI” tomorrow… I feel ok but stable MS-wise. It’s been pretty full on, developed ITP(long course of steroids) and the treatment itself is no joke(almost spiritual), definitely glad I did it, time will tell.
Busy reading Illness as Metaphor, quite difficult to judge considering how dated it is…
In saying that, this resource(Barts MS Blog) is by far and away the best resource and should be prescribed for all PwMS!
Agreed! The comments on here are often balanced too.
And with diet, for sure any change from a majorly processed/meat/sugar heavy to the opposite of that are always surely going to be positive. Stop eating crap, eat more vegetables from any of the various ‘plans’ . With or without MS would anyone in the world would probably feel more energetic/healthier. If any of these diets encourages positive changes though, the pros likely outweigh the potential cons of joining a cult, hehe. Idk.
Also I’m way too stubborn to do what anyone forces on me 🙂 hence I will continue to eat my chocolate as well as more vegetables.
I hope the HSCT has been a success for you!
Thanks! Fingers crossed!
I, too, found the OMS community really good… and met some really lovely people through it (who I’m still in touch with). However, just like you, I did get a bit tired of the anti-drug message…. and as my MS got more advanced I found myself out of sync with them. Found their HOLISM study a bit dubious…
Thank you Rachel and Prof G for highlighting key points of doubt, loneliness, and importance of sharing our experience of living with MS to the healthcare community. As new drugs are trialled and introduced (fingers crossed), and I speak here from a ‘forever patient’ (PwSPMS) perspective, it is important we can speak to the lead investigators as well as pharmaceutical companies who will be marketing to the GPs. Keep talking!
Kind thanks… think talking is key – and making sure our voice is heard.
Best, Rachel
A lovely piece written by Rachel. What I’d like from MS research / therapies is to move me from the Kingdom of the Sick to the hinterland ie I’ll never get back to the Kingdom of the Well, but would be happy to take up residency in the land of not getting worse. MSers can build on the stability provided by therapies which stop any worsening, even with the knowledge that we will carry the deficits from the past.
Scratch the surface and many people have an illness of some kind.
Diabetes, Asthma, depression, anxiety, a leg limp. These are what my expartners had.
To me I feel some people have prejudice because alot is still unknown about MS. Is it caused by an infection?, does it cause depression in all pwMS? etc..
I’ve heard pwMS be advised they will be in wheelchair within a certain amount of years, by a neurologist, surely this is not the right thing to say. Too many assumptions.
I am constantly shocked by how many people – newly diagnosed – are told by their neuros that they might end up in a wheelchair… really thought (hoped) it was a thing of the past. Totally agree re – so much is unknown about MS…. so assumptions are made.
Personally I haven’t found it so helpful to meet others with MS. Everyone’s disease is so different, and with my slow PPMS I’ve found it difficult to find common ground with most other PwMS.
Agreed Anonymous, I feel the same about not having much common ground. I have different aspirations and priorities in life, plus different symptoms to other pwMS.
I have found all of Rachels posts astoundingly interesting and valuable.
I now appreciate her balanced and considered replies to your interview questions.
What especially resonates with me is the emphasis Rachel accurately places on becoming the permanent patient and the struggles with this.
On occasion I thought of healthcare professionals and appointments as: “Oh just go away and leave me alone!”
In turn this has had me pondering whether the routine monitoring system set up to facilitate the ongoing health of PwMS doesn’t in fact have the capacity to facilitate the opposite, at least in part psychologically.
I certainly have to work at putting my adult head on in processing the valid and beneficial reasons for NHS involvement in my life and five years on from diagnosis, suspect this will be life long.
I also respect Rachel for not claiming to talk for everyone with MS.
To date I have not engaged with other PwMS except via this Blog and I have sought to question myself as to why – denial? fear? apathy? Etc? Etc?
I hope my truth is as I’m going to now type it: I haven’t yet felt the need. Instead I’m focussed on trying to remain open and receptive to when I will benefit – where there is a need for me personally.
One aspect of the post I’d like to address here to both you and Rachel concerns the raft of mental symptoms (as well as the physical)
In some respects I have been provided with a better sense of myself as a person by my diagnosis and how I’ve lived since.
I operated below par, even as a sickly person for so many years and berated myself and was teased or berated by others as a result.
Not constantly, but I could feel a failure as a mother, as a wife, a friend, in my career…
Gosh! How freeing it was to learn there was a legit; a VERY legit reason for it!
Then I discovered I’m a stronger person than I’d ever thought possible, and that I have the ability to relish and treasure lots of small things and for living in the moment to a reasonable degree (as Rachel mentions)
Watching a series on the bbc they quoted Beethoven after he was completely deaf as saying: ‘We finite beings are born to suffer both pain and joy. One might say the best of us obtain joy through suffering’
Setting aside the ‘best of us’ it is true for me that alongside the mental traumas of dealing with the physical pain and the anxieties, distress and frustrations of living with MS, Beethoven’s reality hold true for me as a resident of the Kingdom of the Sick.
Will this always be the case, I don’t know, but for now I feel blessed to have it!
Thanks for the post and the interview that helps broaden my insights and assists my making sense of this Kingdom for myself.
Such a lovely, well-written and thoughtful post -so thank you. Found the link you made re Beethoven and joy and suffering -really insightful. I also get what you say about your decision not to engage with pwMS except via this blog. MS is different for everyone – so why should everyone’s coping mechanism be the same? Truly one size does not fit all…
The importance of narrative medicine …
Congratulations and thank you very much for this blog. It has been an enriching learning experience!
I related to your observation that with the advent of modern medicine our visits to the Kingdom of the Sick are temporary before most rejoin the residents in the Kingdom of the Well. But with chronic conditions we take permanent residence with the sick. The public today are unaccustomed to patients that are not cured and have difficulty understanding how modern medicine can fail to restore a healthy state. Thanks for your eloquent article it captures so well the feelings of so many with MS.
Thanks. I do think as a society we do want quick fixes and solutions – and that was something I struggled a lot with when I was diagnosed. Now I am more accepting – which I think hasn’t been such a bad thing.