Daily life of patients affected by rare diseases is still a mystery for a lot of people. And World Lupus Day is one of the opportunities to change this situation. Carenity has carried out a survey among its French and British members and the resulats will be discussed in this article.
Lupus is a chronic autoimmune condition which develops when the immune system attacks the organism’s cells and destroys them. In the UK approximately 1 person in 1,000 is affected by lupus.
According to our survey, 79% of the respondents had been unaware of the existence of this condition before they were diagnosed. But they consider themselves “lucky”, as the diagnostic delay only lasted 1 year for 53% of them, and between 1 and 3 years for 25%.
Today, these patients feel that medical care they have is rather good: 38% have a couple of healthcare professionals they trust, and 35% are happy with their medical team. However, they agree that often they have to do research on lupus themselves, as there is not enough information available for this condition.
They are also well supported by people around them. 79% talk freely about their condition with the members of their family, 62% - with their friends and 34% with their colleagues. Yet, almost one fifth of the respondents admit that they do not discuss their disease with anyone, and 66% of the ones that do, reveal that they are not quite understood by their entourage.
Sun, solitude and misunderstanding
This misunderstanding accompanies the disturbed rhythm of everyday life of lupus patients. Thus, 47% of them have already taken more than 1 month off work/school, 41% have taken several days off because of the disease, and 18% even had to change their profession.
And that is because lupus symptoms can be particularly debilitating. The most common one is fatigue: “I always want to sleep...”; “At work, at a certain time nearly every day, I used to get really tired. Thankfully it was near the end of the day and I could go for a half hour sleep when i got home.”. But also, joint pain: “In winter I avoid going outside for more than 5 minutes, otherwise I can’t use my hands…”; “I also got restless legs at night which does not help either.”.
Patients also mention viral infections and the sun. “My family like travelling and outdoor activities, and I cannot be in the sun.”; “Lupus causes a sort of social exclusion: cannot go to the beach any more, or stay outside by the swimming pool.”; “I had to give up certain physical activities such as swimming (risk of rash or allergic reaction upon contact with water).”
Fighting against solitude
Isolation can provoke despondency and even depression. “I don’t have a job any more, so no social life. I am willing to go back to my former occupation but I am afraid I will not be able to stay active for more than 2 days. Tiredness takes over...”; “Urinary infections, inflammatory rheumatisms, vertigos, all this complicates my life and makes it difficult for my family and friends.”; “I am scared of tomorrow”.
It also sometimes causes patients to focus on themselves and on the most important things: “I had to “sort” my friends: some didn’t understand me, and didn’t respect my limitations. I wanted to follow their lead in the beginning, but I put my health at risk. Finally, in the course of the years, I succeeded in finding activities that I enjoy and that I can do with those who understand me.”