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The diagnosis of rheumatoid arthritis, as told by Carenity members

May 20, 2019

Our members affected by rheumatoid arthritis have told the story of their diagnosis! Symptoms, emotions, examinations, relationships with their doctors.

Carenity survey of 122 rheumatoid arthritis patients in the United Kingdom. 

The diagnosis of rheumatoid arthritis, as told by Carenity members

diagnostic-cancer
On average, patients waited less than a year to be diagnosed and the majority consulted 2 doctors before reaching their diagnosis.

The journey to being diagnosed with a chronic condition can be long. Fortunately for patients suffering from rheumatoid arthritis, the average journey to diagnosis is less than one year after showing symptoms. During this period, respondents said that they experienced different symptoms. These ranged from different severities but the majority of patients complained of the following:

Joint pain | Chronic pain  | Rheumatic fever  | Swollen joints/extremities  | Stiffness | Brain fog Fatigue | Feet pain | 

Before the diagnosis: the impact of rheumatoid arthritis

We asked our members what aspects of their daily life had been affected by these symptoms caused by RA?

douleurs-cancer   Chronic pain - 87%

vie-intime-cancer    Love life - 77%

loisirs-cancer   Hobbies and activities - 76%

fatigue-chronique  Chronic fatigue - 71%

impact-cancer-vie-pro  Professional life - 68%

vie-sociale-cancer  Social life - 66%

vie-familiale-cancer Family life - 60%

The majority of respondents reported that the daily chronic pain was the biggest impact on their life before the diagnosis, followed by their love lives. RA appears to have had a big impact on all aspects of patients’ lives. Fortunately, it seems that the family life of patients was the least impacted, which gives the impression that at patients felt supported and understood by their families through their illness.

Before diagnosis, only 34% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the NHS, blogs, WebMD and just inserting symptoms into Google. However, several respondents mentioned knowing without the aid of any resources, as family members had previously been diagnosed with RA.

Respondents to our survey were not very enthusiastic for alternative medicines, with only 31% responding positively to having tried them. Those who did try alternative therapies used homeopathy, essential oils, acupuncture, reflexology, Chinese medicines, turmeric tablets, copper bracelet and CBD oil.

Being diagnosed with RA: what you had to say

For many diseases, the road to being diagnosed is hindered with misdiagnosis. However, this was not the case for the majority of the respondants to our survey. Only 25% were subjected to a diagnosis error, which is good news for RA patients as it means they can commence their therapy as soon as possible.

According to Carenity members, they were most frequently misdiagnosed with having osteoarthritis, arthritis, Vitamin D deficiency, sprain, endometriosis, chronic fatigue syndrome and tendonitis.  

The shock of the diagnosis  

For some people after years of searching for a diagnosis and not being able to properly label their condition, being diagnosed came a massive relief. For others, it was a shock and a traumatic event. How did Carenity patients react to their diagnosis?

 diagnostic-cancer-reaction It was a relief - 42%

choc-annonce-cancer It wasn’t a shock, I was expecting it - 37%

choc-annonce-cancer It was brutal - 14%

peur-cancer It was horrifying - 14%

soulagement-cancer  I didn’t feel anything in particular - 9%

Finding out that you have RA can be a frightening event but surprisingly, 37% said they were expecting it while 8% of patients can’t remember how they felt at all. Fortunately, most members felt relieved and not particularly traumatised by the diagnosis.

The role of doctors and healthcare professionals

The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took their time telling about their diagnosis whilst also being calm and emphatic. The main problem members found with their doctor was the feeling that they didn’t care and they were cold and distant delivering the diagnosis. However, the positives far outweighed the negatives for RA and their healthcare providers.

 The following statistics show how members felt their doctors handled the situation of relaying their diagnosis to them:

le médecin 

58% - The doctor took the time to explain

55% - The doctor was very calm

41%The doctor was very emphatic 

9%The doctor offered psychological support

ressenti négatif

16% - They were cold and distant

9%    - They were too fast explaining

8%    -  They used cold and scientific language

5% -     They looked like they didn’t care 

 

The patient's struggle when facing RA

We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now they had a name for their condition or despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:

68% of patients felt relieved by the diagnosis but this was coupled with 45% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 21% of respondents. 20% reported feeling lost, confused and alone, 17% felt anger about their diagnosis, 12% of patients had the sensation of being misunderstood whilst only 7% felt discouraged. 

Fortunately, 41% felt determined to fight the disease but only 1% had confidence for the future while 9% felt despair. 

How can diagnosing RA be improved?

The above statistics demonstrate that many patients feel very relieved after receiving their diagnosis, even if this feeling of relief is also coupled with the anxiety, stress and feeling of uncertainty that partners with most chronic illness diagnoses. Carenity members were mostly happy with their doctor and how they received their diagnosis. One member said, "my doctor was so considerate to me and my family" and another claimed, "the care I received from the NHS over the last two years has been exemplery".

The majority of members were happy with how they were told the news and with their doctor's behaviour. However, if they were going to change how the diagnosis was given they said they wanted, "Details of support groups", "more information about which medication to choose" and "more follow-up appointments".

More support and information

The most resounding call for improvement concerning the diagnosis of RA was more support for the future. Although the bulk of members were satisfied with their doctors, there was a resounding call from members for, "more information and psycholoigcal support". They wanted information concerning nutrition, pain management and a care plan.

To conclude, it appears that most members were happy with their doctor’s support during diagnosis but more information and support should be offered after the diagnosis, concerning disease development and symptom management.

 

And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve diagnosis and help raise awareness of rheumatoid arthritis!

avatar JosephineO

Author: JosephineO, Community Manager

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both patients and their families.

Comments

on 6/19/19

Rheumatoid arthritis is an awful disease, my dad had it and osteoarthritis. It reduced him to tears and I felt so frustrated because there was nothing I could do to help.

I have just been referred to a rheumatology in July but am confused as to why. I originally went to the Dr about 6 months ago with symptoms that had been building up over about a year or so. Did a blood test and was told there was little signs of infection so unlikely to be rheumatism. At the time I thought that the increased pain etc was possibly due to the fact that having been on predisinole for 15 years for asthma I had finally weaned myself off them as my asthma improved so much. I already suffer from osteoarthritis and am dreading what the rheumatologist might say. 

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