Lupus is a chronic disease in which, for some inexplicable reason, the immune system’s defense cells attack the patient’s body. The symptoms vary from person to person and are many and varied: fever, fatigue, pain, visual disturbances, nephropathy, swelling of the joints, patches of skin with scabs.
This week Claudia, a member of the lupus community, is helping us and telling us about her daily struggle with the disease. She is also the editor of a blog about lupus called “Lupus Sucks” where she shares her experiences. Here is an interview with me on the Carenity Blog. Good reading!
Your everyday life with lupus
Carenity: Hello! Can you introduce yourself in a few words?
Interview Lupus: My name is Claudia, I am 26 years old. In a relationship for 8 years, I am now the happy mother of a 3 month old boy. I am currently looking for a position in the field of communication.
Carenity: When was you diagnosed with lupus? How was it?
Lupus Interview: In 1996, my lupus was diagnosed at the age of 9. I was young, which was surprising at the time. It was in the children’s hospital in Lisbon. At that time there was a lot of talk about lupus in Portugal: TV commercials, the Lupus Association and even a television series called “Emergencies” that dealt with patients with lupus, often the episodes were based on cases from real patients. So when I became aware of my illness at the age of 9, I already knew a little about it. My mother took me to our doctor after petechiae (small red to purple patches of skin) appeared on my face. Throat and ears. Neither my mother nor I suspected that it would be a TTP (Thrombotic Thrombocytopenic Purpura). This purpura caused my platelet count to drop extremely and shortly afterwards I was diagnosed with lupus. (By the way, the doctor who diagnosed me at the time was herself lupus!).
Carenity: How does your illness affect your daily life (social life, work, personality)?
Lupus maintenance: Fatigue and pain are permanently extremely disabling for two reasons: – Even when I am not in lupus, I feel constantly deprived of my energy. It is difficult to get up in the morning, get ready, go out, go to work, walk, etc. It is difficult to lead a normal life in these conditions. Whether I sleep 3 hours or 3 hours at night, the result will be the same regardless of my physical condition. – Fatigue and pain are not visible, but can be felt. So I’m not very credible to people in general, if I turn down a trip or an activity, or if you arrive in the middle of the day, I’m already flat, etc. People find it hard to believe in something they don’t show and tend to (in my experience) downplay the feelings of the sick. In family / friend life I am often confronted with “forgetting” my health problems or with a misunderstanding. And in terms of work, it’s very difficult for me to follow physically. In the future, I would switch to a position with flexible working hours.
Carenity: What are your priorities / goals at the moment?
Interview Lupus: One of my priorities right now is my son. My pregnancy was very tough with the illness, very monitored, stressful, etc. Now that this is all over and my little boy is here, I plan to spend a lot of time with him! But I’m also thinking of going back to work towards the end of the year!
Carenity: What makes you happy in life?
Lupus interview: feel good, fit, just be happy! I generally enjoy going out and most of all I like the summer and the beaches! The sun is not my “enemy”, unlike most lupus patients, so I use this summer time with the consent of my doctor. I like cars, motorsport in general! I also love animals: dogs, ducks, turtles: I love them all, haha! But I only have one little poodle named Licorice!
>Your blog and your vision of patient 2.0
Carenity: Why did you create your blog “Lupus sucks”? Who is it addressed to?
Lupus Interview: One day I came across a Lupus blog and started reading (La dialysis et le Lupus de Marie, in my links). She seemed happy and seemed able to reconcile illness / everyday life. I contacted her, chatted with her and she advised me to create a blog to “empty my pocket”. But very quickly I noticed that many newly diagnosed people with very different seizures, mostly with very different seizures, read and wrote to me. Then my blog went madly for information, or to support other patients. Today my blog is mainly aimed at lupus and its relatives who want to understand better through the comments I make about my experiences. I get a lot of messages from relatives. Something,
Carenity: How do you see the patient’s “health actor” and the development of his relationship with the doctor?
Lupus interview: I am fortunate to be accompanied by a very good hematologist who understands me and listens to me. He does everything for my health and always explains everything to me without taboos. Plus he’s nice, smiles and that’s fun too! Above all, being an actor for your health means being aware of your health and doing everything possible to maintain your health. It’s not about feeling submissive, overwhelmed by the disease, but on the contrary, taking responsibility for your health, engaging in dialogue and making decisions with your doctor. It means getting involved with your illness, at least finding the strength and courage to improve everyday life.
> You and Carenity
Carenity: What made you decide to join the lupus community on Carenity?
Interview Lupus: I only knew Carenity by name, and after contacting a Carenity contact I started. I didn’t think there would be so many lupus patients! So in the beginning it was curiosity to see how it was done and so on. In the end, I find the concept well thought out!
Carenity: Why do you want to return to Carenity?
Interview Lupus: The forum is a real place for exchange and sharing. We can all help each other by sharing our experiences, despite our attacks, which are often very different and diverse. When I was younger I would have loved to meet people with the same disease to discuss. Today it seems logical to me to share my experiences, and if they can calm down, inform or simply answer the questions that patients ask themselves, I am happy!
Carenity: The last word?
Interview Lupus: I thank Carenity for giving me the opportunity to write these lines. Thank you also for this page, which enables us to feel less alone, to be less misunderstood and to meet people in the same situation as us.
Thank you Claudia for this beautiful testimony! He brings a lot of support and hope to this chronic lupus disease. If you also want to discuss, calm down, or just find information about lupus, don’t hesitate to join the lupus community on Carenity.