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Osteoarthritis diagnosis: Carenity members share their story

9 Sep 2020 • 6 comments

Being diagnosed with a chronic illness can change a person's entire life. This is the story of Carenity members living with osteoarthritis.

Osteoarthritis diagnosis: Carenity members share their story

Survey conducted by Carenity among 110 patients living in the UK.

diagnostic long 

On average, patients waited 3.3 years and consulted 3 doctors before reaching their diagnosis.

 Yet, a majority of respondents experienced symptoms consistent with osteoarthritis. Here are the symptoms that alerted them to a problem:

Fatigue | Stiffness | Mobility issues | Swelling | Joint pain | Depression 

Before receiving proper diagnosis and treatment, osteoarthritis patients had their daily lives turned upside down by their symptoms. Respondents saw almost every aspect of their daily lives significantly affected by their OA. Chronic pain is the most prevalent symptom that keeps them from living as they did before: 

douleur-physiqueChronic pain - 94%

famille Leisure and physical activity - 86%

vie-travail  Love life - 85%

intime-sexe-relations Social life - 75%

loisirs Family life - 66%

vie-sociale Chronic fatigue - 62%

fatigue-sommeil Professional life - 60%

Before diagnosis, only 43% of patients researched their symptoms online in an attempt to find out what was wrong. A majority of those individuals reported they did their research by typing their symptoms into Google, searching NHS websites and going from there.

60% of respondents decided not to try any alternative treatments for their OA such as homeopathy, massage or traditional Chinese medicine. Those who did seek out alternative therapies reported trying turmeric, acupuncture, massage, reflexology, chiropractic, yoga, CBD oil, Omega 3 and essential oils.

On the other hand, 96% of respondents were not victims of a misdiagnosis. Their symptoms were well recognised as signs of osteoarthritis. However, some were diagnosed with the following conditions:

Complex regional pain syndrome | Depression | Sciatica | Generalised anxiety disorder
|
Walker-Warburg syndrome| Bursitis  

Misdiagnosis: what patients had to say

"I spent many years trying to work between visiting doctors, specialists. As my symptoms had lasted for many years, everyone decided that it was not a physical but mental problem. So after this diagnosis by several specialists my doctor prescribed anti-depressants for at least 3 years. My health deteriorated during this time as I couldn't cope with a pressurised work situation, tiredness and pain!"

"Because I was so young when my symptoms started, the consultant was not willing to consider that my symptoms were caused by anything other than obesity & lack of exercise. It was only when I changed to a new GP & was referred to a new consultant that I was finally taken seriously. It turns out that a lot of women who had the same operations I had as a baby end up with early onset osteoarthritis! If my last consultant had listened properly when I told him about my medical history, the answers were right there!"

suiteBeing diagnosed with a chronic illness is life-altering. Getting a diagnosis of a chronic condition can be a different experience for many patients: they may be relieved to have a diagnosis and be able to begin treatment, but they may also see it as frightening and brutal. Most OA patients were expecting to receive such a diagnosis.                                    

It wasn't a shock, I was expecting it - 51%

ne se souvient pas It was a relief - 29%

pas-un-choc-diag It was brutal - 15%

effrayant I didn’t feel anything in particular - 14%

soulagement It was frightening - 10%

rien ressenti I don't remember - 9%

The healthcare professional plays a key role in sharing the diagnosis with patients. Sometimes patients do not feel sufficiently listened to or informed about their condition; others, on the other hand, are grateful to their doctor for having supported them through this moment. For Carenity members with osteoarthritis, the healthcare professional was an ally. Patients appreciated that their doctor remained calm and empathetic and took the time to explain their illness to them.

le médecin 

53% - The doctor took the time to explain
52% - The doctor was very calm
34% - The doctor was empathetic 

ressenti négatif

14% - The doctor was cold and distant
9% - The doctor didn't seem to care
6% - The doctor used only scientific jargon
4% - The doctor went too fast when explaining 

 

The announcement of the diagnosis: what patients had to say

"The doctor at the hospital was amazed I could walk and said my left hip was just shattered. My doctor said she was so sorry that she didn't think it was OA as I was so young and she apologised for her error."

"My doctor kept calling osteoarthritis 'just wear and tear'. The consultant who did my hip replacement was much better, he told me about the arthritis and how it would affect me in the future."

"The GP shared his thoughts on the likely outcomes of continued pain and walking problems I was going through, talked about what treatments or tablets he would be putting me on. We tried a few different pain relief tablets to find a good match that would work for a good length of time."  

Following their diagnosis, 65% of patients felt relieved to have been diagnosed and 36% were determined to fight the disease. In addition, 30% felt anxious, 45% felt angry and 15% were shocked. Loneliness also weighed on them: 23% felt alone, 18% misunderstood by those around them.

 

merci à tous 

Many thanks to all the participants in this survey! Our Carenity members took the time to share their experience to help other patients get the right diagnosis sooner.

 

"Doctors need to be more sympathetic, explain things and not just offer pills."

"Diagnosis is so important that it should be done by a capable concerned specialist that has time to answer questions. Not by a doctor who only has 5 minutes to tell you results read from a letter from the specialists and can inadvertently misinterpret the words."

"I think GPs should be more open to alternative treatments to help your condition."

"More info should be given on lifestyle - diet and exercise, anti-inflammatory foods, what not to eat or drink, what kind of exercise NOT to do. More empowerment of the patient rather than - 'this is old age, nothing can be done apart from take medication' approach."

"My GP at the time was very good at explaining and listening to me. He talked about what could help me, and remained very supportive throughout my time as his patient. He was never brisk in his manner, he understood that it would have a big impact on my life and restrict my plans for work and any social events."

 

Do the results of this survey reflect your story? Let's share our experience and discuss together to move things forward!

avatar Courtney Johnson

Author: Courtney Johnson, Community manager UK & US

Courtney is Community Manager for Carenity’s UK and US platforms. Her role is to facilitate discussion and answer questions among Carenity’s English-speaking members. She also assists in the editing and... >> Learn more

Comments

richard0804
on 10/09/2020

Nice one Courtney. What a very in depth article.... Very informative.... A 'riveting read.  Mirrors my own experience to a tee. The diagnosis should be left to the consultants and professionals who know what they are taking about. Not the GP. Too many people have suffered for years and years waiting for the correct diagnosis, I waited nearly 30 year's to find out the truth.. That I have OA..       STAY SAFE 😷 💐 

nineteen_gale
on 10/09/2020

Being a nurse I diagnosed my OA myself. I had 2 RTAs Road traffic accidents and fractured my pelvis on both sides. I was only 30 and 34 then and the consultant did tell me that where my fractures were, I would develop Arthritis in my older age. I started having spinal problems as my pelvis had healed with a tilt and my posture was affected. I was referred to a Rheumatologist who diagnosed me with OA and referred me back to my GP who put me on anti inflammatory for several years. When the media reports came out that the anti inflammatory was causing heart attacks, I took myself off those drugs and went on natural alternative therapy. I have had 5 spinal surgeries and now walk with crutches which are permanent It is indeed a very debilitating disease and it wears you out. What annoys me most is when young GPs who are inexperienced and do not have time for seniors, try to fob you off with, "Its old age my dear" or "its wear and tear, you have to expect it at your age" and offer you no advice on exercise, diet and just put you on pain killers.

Courtney_J
on 11/09/2020

@richard0804 Thank you Richard for your comment! I'm glad to hear you liked the article 

@nineteen_gale‍ Thank you for sharing your experience with us! I'm sorry to hear you've been treated rudely by doctors, let's hope that with more awareness we'll see some changes! 🤞

Take care,
Courtney

nineteen_gale
on 11/09/2020

@Courtney_J‍ 

Thank you Courtney.

It takes all sorts to make this world. 

You take care and stay safe.

Kind regards

Christina

josie42
on 15/09/2020

@richard0804 

Richard reading your article was like looking in a mirror at myself. Like you I have had many accidents, broken bones every thing you can name. Mine goes on for many years. Like you I was put on so many pills pain killers you name it. Yes poor old lady you have to live with it. The sad thing is It was poisoning my body.  I was doing a lot of harm to my bowls. Yes you guest it . I was rushed into hospital with bust bowls they said I had a tumma that bust . I now have a bag . All because of to many pain killers. The doctors I must say was only doing what they thought was best for me. Unfortunately I can not have this reversed. 

What im saying before you take any pain killers ask if there is anything else. I walked and swam before I was rushed into hospital so I did try to help myself . Walking was very painful. Walking is hard now but I do it every day. I swim when I can I'm not aloud to go on my own . I fall a lot. What I'm saying please don't let it beat you even the smallest walk what ever it is try . Stay safe . Josie 42

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