Thank you!: Just want to say thank you to everyone who... - NRAS

NRAS
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Thank you!

Shalf
Shalf

Just want to say thank you to everyone who has ( and still are) sharing their personal stories on my last post. This has been a very interesting and popular thread. It has certainly helped me by way of sharing. To have an Autoimmune disease can change people's lives so much. Not just in a painful physical way but painful emotionally especially due to the facts that ( sometimes) others can't see the illness which creates terrible misunderstanding, isolation and lack of consideration in particular, work places and government benefit interviews etc. Some people have relationship breakdowns because of lack of empathy. But WE FEEL IT! in every way. So, I am grateful to all who shared their autoimmune journey.

Best wishes to you lovely people.

Suzie x

5 Replies
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Hidden
Hidden

Thank you for your interesting question. I fancy it might be two questions that are possibly inseparable. 1) What was the cause? 2) How did it first manifest itself? The first seems to be a genetic tendency with a kick start of stress, whether physical or emotional bodily onslaught. The second is small joints according to rheums and text books, but how many people have started with large joints and had (possibly inappropriate) treatment/surgery etc? It would be an interesting online survey.

Shalf
Shalf
in reply to Hidden

Hi Norisa, I agree! In my experience it feels like there are so many stones unturned. So many questions unanswered. I feel the root of autoimmune diseases isn't looked into enough ( hence my question) which attracted so many people. A remarkably huge response which I think displays most people's needs/wants to express themselves and to give meaning to their disease and indeed their symptoms that we live with on a daily basis. I feel by sharing our thoughts, really listening to others could play a massive role in the management of RA and in research to hopefully find a cure. I have a distaste for what appears - lack of respect and compassion. I reiterate for all readers, that's MY experience with my personal journey outside of this forum. I am sure doctors/nurses etc do care but they are time-bound. More depth and discussion is needed into how individuals think their disease occurred, how it presented itself and so on. I am aware there are certain questions in life that cannot be answered however it is crucial that sufferers are listened to. I feel WE have an important role to play in the treatment and the research. Yes, listen to the Rheumatologist. It's their department of expertise but I just wish there were people in Rheumatology that we could speak to properly without getting rushed out the door with a 6 month follow up appointment or being told to speak to your GP! A ten minute GP appointment isn't good enough. There is a lot of money getting wasted on packs of drugs ( 3 months supply and more) getting delivered to people who have reported within two weeks or so that they are not tolerating a particular drug. That's the supplies in the bin. Investing in other ways ( having a Rheumatology support worker/s taking time to communicate directly with the patient) could be

key in the treatment. Just thinking of ideas. I feel frustrated with the lack of communication to what's happening to our bodies with the disease and drugs and lack of emotional support. How can we be expected to accept something so debilitating when we can't get some kind of reasoning. It's an interesting subject to which everyone who suffers has a right to express.

Suzie x

Hidden
Hidden
in reply to Shalf

Hi Shalf. I wrote a well considered response (in my view !) yesterday, but there was a 'network issue so' it was lost! (Possible similar issue at last clinic visit)

In fairness to the NHS, i don't think they have, or now will ever have, the manpower to sit and take time to listen to patients concerns. That belonged to a past era. I do believe most clinicians do care, but what we are really wanting is something much more holistic and inclusive. Talking to someone with MS they have the same issues. They have an annual visit from a support Nurse.I think possibly auto immune diseases are especially difficult as initial symptoms can be subtle, diagnosis uncertain, treatment slow acting,etc.

Ideally everyone who wanted one would have an advocate/witness in the room with them when seeing a Consultant. Writing down questions isn't adequate because the Consultant speaks too! A 'drop in' nurse clinic would be good. I would like to think through support mechanisms for men, for families etc. (Its up and running for people who have had heart attacks.) Nras is great. Support emanating from clinics or GP surgeries would be fantastic. Maybe i will put some ideas forward at OHs Rheum clinic....

Shalf
Shalf
in reply to Hidden

Hi Norisa, brilliant idea to put ideas forward. I agree! The nurses etc must feel frustrated too. I know they do their best. Sorry to read you lost your response yesterday, it's happened to me and very annoying! Been dozing on and off. Hope to get a peaceful sleep tonight. Had ESR test done this morning. Inflammation still there :(

Suzie x

Hidden
Hidden
in reply to Shalf

Sorry about the ESR. Very trying! i have always believed that the body wants to regain its equilibrium but RA rather challenges that thinking sometimes. I hope some combination of meds, or something else works for you soon.

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