How to accept your chronic condition diagnosis? Carenity members have shared their thoughts
Published Nov 29, 2022 • By Claudia Lima
The announcement of the diagnosis of a chronic disease can be overwhelming. Having a chronic condition means that your life will never be the same again. Once the diagnosis is made, people's reactions vary.
How can you accept your chronic condition? What can you do to cope with it better?
We conducted a survey among our French members to learn more about their experience, and here is what they had to say.
In France, approximately 40% of the population is affected by a chronic disease, which greatly alters quality of life. The diagnosis of a chronic disease is based on various diagnostic criteria and the time taken for diagnosis differs from one person to another.
We conducted a survey from 20 October to 20 November 2022 in which 467 Carenity members based in France participated. The aim of this survey was to understand the feelings of chronic patients after the announcement of their diagnosis and the changes they had to make to their lifestyle in order to better manage the disease.
What conditions are Carenity members affected with?
Of the members who responded to the survey, 10% are affected with multiple sclerosis, 7% by fibromyalgia, 7% with ankylosing spondylitis, 5% with Parkinson's disease, 5% with bipolar disorder, 5% with rheumatoid arthritis, 4% with type I diabetes, 4% with type II diabetes, 3% with chronic depression and 3% with breast cancer.
When was the respondents' condition diagnosed?
The first-time diagnosis of the disease is an important date. Of the respondents to the survey, 51% were diagnosed between 0 and 5 years ago, 15% between 6 and 10 years ago, 10% between 11 and 15 years ago, 6% between 16 and 20 years ago, 11% between 21 and 30 years ago, 4% between 31 and 40 years ago and 3% were diagnosed more than 40 years ago.
What was the diagnostic delay?
The time between the first medical visit, clinical examinations and additional tests can seem long. In order to establish a definite diagnosis, doctors follow a rigorous procedure to explore the symptoms and determine the underlying condition.
Thus, of the members surveyed, 44% had a diagnosis of their disease in less than 6 months, 22% between 6 months and 1 year, 13% between 1 and 3 years and 22% of them waited more than 3 years to receive a diagnosis.
What were the respondents' feelings at the moment of the diagnosis ?
When diagnosed with a chronic illness, each person experiences various emotions and expresses them differently.
We asked Carenity members how they felt:
Most of the respondents felt worried (36%). This was followed by fear for 26% of responses, sadness and loneliness for 24%. 23% of the respondents said they were expecting it. Then followed anger (20%), shock (18%) and denial (13%). 8% of the patients claim they did not feel anything at the announcement of their diagnosis.
What was the respondents' reaction after the diagnosis?
The news of a chronic illness can cause shock, denial and revolt, among other things. But how do people usually react when the news starts to sink in?
Our respondents had to select at least 1 reaction among those suggested. Telling people around them right away accounted for 46% of the responses, understanding that their life would change for 41%, and withdrawal into oneself for 27%.
20% of the patients cried a lot, 14% experienced difficulties in talking about it with people around them, while 12% of the respondents did not want to talk about it at all and 2% preferred to have the doctor talk to the family.
What was the delay between the diagnosis and the start of care/treatment?
Once the diagnosis has been made, the care plan can be defined and the patient can start their treatment. This may involve medication, dietary or lifestyle measures, therapy or rehabilitation, for example.
Of the members who responded to our survey, 32.7% started treatment within a week of diagnosis, 9.9% within two weeks, 20.8% within a month, 11.9% about two months after their diagnosis and 24.8% more than two months after their diagnosis.
What did the respondents feel at the start of their treatment?
After the announcement of a chronic disease, patients have to wait for treatment prescription. Once treatment is defined, adherence to it is necessary for its proper functioning. However, patients' feelings also need to be taken into account.
Uncertainty represents 40% of the answers, followed by fear (33%), the feeling of being supervised, 27%; the feeling of loneliness, on the contrary, represents 22% of the answers, 21% of the respondents felt relieved, 17% - scared of changes and 5% satisfied with their treatment.
Other feelings mentioned in the survey were:
- Absence of a treatment plan,
- Non-existent treatment,
- Insufficient or non-existent treatment effectiveness,
- Triggering of mental disorders,
- Sadness linked to the duration of treatment,
- Lack of understanding of the disease,
- Refusal of treatment,
- Persistent doubt about diagnosis and care offered to the patient.
Overall, 68% of Carenity members who responded to the survey were satisfied with their treatment. Also, 64% feel or have felt supported by those around them.
What did the respondents undertake to try and better accept their diagnosis?
After the emotional upheaval that accompanies the diagnosis of a chronic illness, a patient usually goes through several stages of acceptance.
This is what our respondents have chosen from the options we had provided (an average of 2 answers were given by patient):
- 35.3% correspond to: "I have reviewed my lifestyle",
- 34.0% correspond to: "I have continued to live my life as before the diagnosis",
- 33.0% correspond to: "I have joined an online forum",
- 28.9% corresponded to: "I have not been able to accept the disease",
- 22.1% correspond to: "I started to take care of myself and decided to have more time for myself",
- 18.6% corresponded to: "I asked for a psychological follow-up",
- 16.9% corresponded to: "I discussed it a lot around me",
- 14.3% correspond to: "I got help from my relatives",
- 12.2% correspond to: "I joined a patient association".
Some members chose a different way, such as actively seeking information about their disease, practicing sports, changing their place of residence and, for some, preparing for the end of life.
Finally, we asked Carenity members about the degree of acceptance of their chronic condition.
Of the 467 respondents, 38.3% said they had accepted their diagnosis, 33% said they had accepted it partly, 9.6% had not yet accepted it and 19.1% said they would never accept it.
In order to live as normally as possible with a chronic disease, one must accept it, and even if the announcement of the diagnosis has caused a hurricane of emotions, this is absolutely normal. It is important to get help if you have a chronic condition, if it is necessary, and to try to understand the disease in order to be able to manage it better.
As far as healthcare professionals are concerned, more work should be done concerning the announcement of the diagnosis, in order to enable the patient to benefit from the best possible conditions, to have access to detailed and up-to-date information, and to be listened to and supported.
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Enquête Carenity menée du 20 octobre au 20 novembre 2022
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