Psoriatic arthritis diagnosis: Carenity members tell their story
21 Jan 2020 • 4 comments
Carenity members affected by psoriatic arthritis have graciously told us about their journey with their psoriatic arthritis diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis.
Carenity survey of 269 patients across the Carenity platforms.
A majority of the patients waited more than a year to be diagnosed and consulted with 3 doctors before reaching their diagnosis.
Unfortunately for those suffering from psoriatic arthritis, the time period to arrive at a diagnosis after experiencing symptoms was an average of 5.8 years. 28% of patients who participated in this survey received a diagnosis in less than a year from the initial onset of symptoms; 72% of respondents received a diagnosis after more than a year.
During this period, respondents experienced varying symptoms with different severities. However, the majority of patients complained of the following symptoms:
Joint Pain| Swollen Joints| Fatigue | Limited Mobility | Deformity of Joints
Before the diagnosis: the impact of psoriatic arthritis
We asked our members about the impacts the symptoms caused by psoriatic arthritis had on their daily life before reaching a diagnosis, and this is what they had to say:
Chronic pain - 85%
Hobbies and activities - 77%
Professional life - 71%
Chronic fatigue- 71%
Personal Life - 59%
Social life - 58%
Family life - 50%
Other - 4%
The majority of respondents reported that psoriatic arthritis had the greatest impact on their chronic pain and leisure and hobby activities before the diagnosis. Only 8% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis, while 57% of respondents reported that 5 or more parts of their daily life was impacted. Members, in general, felt that the symptoms impacted their family life the least.
Before diagnosis, only 48% of patients did their own research on the internet concerning their symptoms. A majority of those individuals reported using the internet to access the arthritis association website, Carenity or typing symptoms or concerns into Google and other search engines. Additionally, others mentioned they read medical journals and talked to family members and others.
A majority of respondents did not try any alternative therapies for their psoriatic arthritis, such as homoeopathy. Only 34% of the patients that participated in this survey said they did. However, those who did try alternative therapies reported use of homoeopathy, CBD oil, massage, relaxation classes, reflexology, Reiki, anti-inflammatory diet, turmeric, cod liver oil, apple cider vinegar, coconut oil, acupuncture, and gluten-free diet.
Being diagnosed with psoriatic arthritis: what you had to say
For many diseases, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. For psoriatic arthritis, 48% of the participating patients experienced a diagnosis error prior to their ultimate diagnosis.
According to the Carenity members that participated in this survey, they were misdiagnosed with osteoarthritis, rheumatoid arthritis, fibromyalgia, Morton's neuroma, and depression.
The misdiagnosis/misdiagnoses did result in causing considerable stress. One member said they "kept going back as no medication helped with the pain and stiffness until one doctor finally took me seriously and did blood tests," and another member stated "I went back and forth between doctors. Most said it was in my head, or it was fibromyalgia or osteoarthritis... it took years and years to get a proper diagnosis. "
The shock of the diagnosis
How did patients react to their diagnosis?
It was a relief - 43%
It wasn’t a shock, I was expecting it - 34%
It was brutal - 17%
It was horrifying - 12%
I didn’t feel anything in particular - 10%
Finding out that you have psoriatic arthritis can be a frightening event, but 10% said they did not experience any particular sentiment, while 8% of respondents said they can’t remember how they felt at all.
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 time in discussing with them their psoriatic arthritis while also being calm and emphatic. The main problem members felt with their medical care was the feeling that the practitioner didn’t care and was not attentive.
Some comments from respondents described that the doctor expressed empathy and told them it was not life-threatening when delivering the diagnosis, while others described the delivery as being "direct".
Fortunately, overall, the majority of respondents had positive feedback regarding their medical care and doctor; however, some mentioned that there should be more psychological support as the news is "life-changing".
59% - The doctor took the time to explain
54% - The doctor was very calm
35% - The doctor was very emphatic
8% - The doctor offered psychological support
11% - The doctor went too fast when explaining the diagnosis
11% - The doctor seemed like he/she did not care
10% - The doctor used too much scientific language
10% - The doctor was cold and distant
02% - Other
The patient's struggle when facing psoriatic arthritis...
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now that they had a name for their symptoms/condition, or whether they felt despair for their future medical journey. Many members felt several emotions at once and this is what they had to say:
64% of patients felt relieved by the diagnosis, but this was coupled with 33% feeling a great deal of anxiety. This anxiety was accompanied by shock and surprise for 12% of respondents.
16% felt angry about their diagnosis; 15% reported feeling lost, confused and alone; 20% felt discouraged, and 22% of participating patients felt like no one understood what they were going through.
Fortunately, 39% of participating members felt determined to fight the disease, but only 13% had confidence for the future, with 11% feeling despair.
How can the diagnosis of psoriatic arthritis be improved?
The above statistics on how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of psoriatic arthritis. We asked our members how they felt the process could be improved and many respondents said they would have appreciated more information about the seriousness of the disease and treatments, as well as more psychological support following the initial diagnosis.
The most resounding suggestion for improving psoriatic arthritis diagnosis experience is for doctors and doctors' offices to be compassionate, without sugarcoating the diagnosis and provide the patient with sufficient information on what they can expect going forward, and how to manage it.
Another important suggestion from members is to do your own research, be prepared, and have/ask questions.
This is what some members had to say:
"I regret not taking in everything that was said & not asking the questions I probably should have asked."
"I wish that the doctors were more understanding and could have told me what I would be going through then it wouldn't have been such a shock when every part of my body started to hurt. It would have been lovely just to have some reassurance that they would help me the best they could but was mostly just left to get on with it for several years before the hospital found a consultant to deal with people who have psoriatic arthritis."
"It wasn't explained very well and at the time I was also told I have fibromyalgia and given a few leaflets and told to go back to the doc to get more meds."
"I appreciate the help I am getting now. In the beginning, I was frustrated and scared. I suggest for anyone out there to get a good MD and get diagnosed as soon as possible."
"I'd have liked to have had my symptoms looked at more closely at the start. I felt that seeing as I'd had osteoarthritis for so many years it clouded the judgement of the doctors. I appreciated the doctor who sent me to see the rheumatologist, I felt I was getting somewhere then."
Members feel that their doctor should show empathy and dedicate time to answer any questions when delivering the diagnosis. Patients also encourage doing research on your own to be prepared to get the answers you need to better be prepared to understand and live with the condition.
Members want doctors to be more detailed in their analysis to ensure patients are diagnosed correctly and quickly, without having to go through different doctors and misdiagnoses.
And what is your story?
Share your experiences and those of loved ones in the comments below to discuss how to improve the psoriatic arthritis diagnosis experience!