Looking good is not necessarily a sign of good health

Beatrice Blouet, a 54 years old french writer, has been diagnosed with glomerulonephritis. In December 2020, she published a book recounting her medical adventures/misadventures (nephrology and accident). She shares her experiences and challenges she has to go through every day to live a normal life.

What was your diagnosis, and can you briefly describe the treatment you have received?

I have an impure nephrotic syndrome or glomerulonephritis. The first treatment (corticosteroids) failed. I have been on immunosuppressants for 8 years (although I have not had a transplant). In 2016, I received a course of Rituximab [Editor’s note: type of antibody therapy] which failed due to an allergic reaction.

What have been the most challenging aspects of being diagnosed and living with kidney disease?

The treatment is very heavy and has many side effects that are difficult to bear day and night. Relapses are also very difficult to live with. Each adjustment to the treatment generates new physical changes. My disease is invisible (I always look great), and paradoxically, this characteristic is sometimes very painful. I am forced to undergo a heavy medical protocol, and it is not always easy to reconcile everything (work, appointments, exams, side effects).

 How do/did you manage or cope with these challenges?

I am fortunate to have an excellent relationship with my nephrologist and my referring doctor. My nephrologist even agreed to preface my book!

What are the most important learnings in your journey with kidney disease?

I learned to express my feelings accurately, without exaggeration or minimization. I also discovered that salt is everywhere in food which makes controlling my salt intake a difficult exercise.

What do you think are the more important things that can help patients to live well with kidney disease?

I believe that it is essential to have confidence in your caregivers. You have to be able to talk to them, share your feelings easily.
For me, therapeutic writing is an indispensable tool to be able to step back from one’s illness and health path. Above all, it allows us to laugh about it!

Finally, having easy access to cafés or restaurant toilets in cities, without necessarily having to drink a coffee, is also important.

What sorts of things would you suggest helping patients become better empowered and be in more control of their health/life?

Do not hesitate to change doctors if there is a lack of trust or empathy. Write, participate in writing workshops, have a personal project (artistic or sports), work if possible. Try to have “the same” life as without the disease and respect yourself: respect your fatigue, your rest periods, and your limits.

What are your hopes and fears for the future concerning your disease and your life in general? Are you hopeful that you will be okay?

I don’t think I will ever be completely cured. I would like my syndrome to be under control. I would like to not relapse regularly and have fewer side effects. I am at a turning point right now, and as I write these words, I don’t know what the next steps will be.

What is something you wish people knew about living with kidney disease?

I would like people to know that looking good is not necessarily a sign of good health. I would suggest introducing salt education for everyone starting in childhood. Finally, I would like to see chefs preparing dishes (on TV) without salt or at least very salty ingredients.

How did the recent COVID-pandemic change your experience with kidney disease? 

With my immune deficiency, I am very anxious about going out, going to closed spaces, seeing people, a bit like everyone else, but only worse!