What is the social impact of invisible illnesses? Carenity members share their opinions!

387 members from France, the US and the UK took part in our survey

The survey was conducted between November 22 and December 8, 2021 in which 387 Carenity members in France, the United Kingdom and the United States took part.

Participant profile

The majority of the respondents (75%) are affected by the following conditions:

The majority of the members interviewed (53%) are between 40 and 60 years old:

They were diagnosed with their chronic condition at the following ages: 

Impact of chronic conditions on everyday life

We asked Carenity members about the impact of their chronic diseases on their daily lives. The symptoms they experience are very detrimental to patients' lives and well-being. Patients' daily lives have been affected in the following ways:

Impact on physical activity – 81% 

Impact on mood and morale – 81%

Impact on social life – 70% 

Impact on professional life – 70% 

Impact on leisure time and hobbies – 66% 

Impact on romantic life – 61%

Impact on family life – 61%

The social impact of chronic and "invisible" illnesses

In addition to physical pain and the impact on quality of life, people with chronic diseases can also experience emotional and social hardship. Friends and family are not always able to understand the patient when he or she feels unable to go out or engage in certain activities because of symptoms.  Thus, patients frequently hear the following reproaches:

Members whose response was “Other”, mentioned the following statements they'd heard: 

“You've found yourself the perfect disease that can't be proven!” 

“It's all in your head!” 

“You're just tired all the time!” 

“Just watch what you eat and you'll feel better!” 

Such statements and criticisms have significant consequences for patients with chronic illnesses.

Indeed, many feel misunderstood, belittled or even angry: 

Only 8% of respondents did not feel hurt by the remarks made against them. 

We asked the surveyed members what they would like to say to those who criticize or make disparaging remarks about them or their health.

Here are some of their answers:

“Do a little research before you speak!” 

“Spend a day in my shoes before you criticize me!” 

“You have no idea what I go through on a daily basis. Just try to listen and understand me, I'm not asking you to find an explanation or a solution...” 

“You should try living in my body for one day, only could you understand!” 

“It's hard to have to justify your pain, that the pain is real and not just psychological. And it's not because we don't complain that we're not really ill.” 

“Try to put yourself into my shoes for at least 5 minutes, it wasn't my choice to suffer like this…” 

“I don't wish this disease on anybody, not even on my worst enemy. You have to go through it to understand what it's like, even if you can't see it!” 

Advice from experts on how to live better with chronic illness

Accept your condition!  

Receiving a chronic illness diagnosis can change your entire life. It is often followed by a phase of incomprehension and anger. Psychological support can help patients accept his or her condition more quickly.

Once the disease is accepted, the patient will need to learn how to cope with it. The patient may have to change his or her lifestyle: review his or her diet, adapt his or her physical activity to his or her new abilities or start practicing a physical activity, be rigorous in taking his or her treatments, etc. 

Take an active role in your treatment! 

Once the diagnosis is made, the patient must learn “to live” with the disease. To do this, it is important to take an interest in your condition - learn the symptoms to be able to predict or prevent any relapses or flare-ups. It's crucial for patients to learn to self-manage and to be able to take care of themselves in the absence of a caregiver.

Then the patient should learn to organize his or her day according to any symptoms, without letting the disease take over their life.

Talk openly about your condition! 

You shouldn't be afraid to speak about and to explain your condition to your family and friends. The close circle of family and friends plays a key role in the acceptance of the disease and in the way patients perceive themselves. Family and friends should be a rock for chronic patients.

Be transparent about your condition with people at work! 

Whether in private or professional life, it is recommended to be as open as possible about your disease, communication is key.

Some companies may offer adjustments to working hours (e.g. part-time employment, or delayed start), or adapt the employee's responsibilities to their condition, if it prevents him or her from performing certain tasks.