While the focus is often on taking care of one’s physical well-being, the challenges of living with a chronic disease can take a tool on people’s emotional health. But it is important to know that you as a patient is not alone and that a variety of resources are available to help patient maintain a positive mindset. In this episode of “Spotlight of Pulmonary Fibrosis”, we hear from Eszter Rozan a patient from Hungary and Dr. Bardia Monshi , a clinical psychiatrist from Austria. Listen to their discussion about the importance of finding the right support team and the role of psychological support in helping patients to deal with changes in their daily life and feelings of uncertainty.
Welcome to this episode of spotlight on pulmonary fibrosis. In this episode, we are going to be talking about psychological support and quality of life. Here with us today are Esther Rozan, a patient advocate from Hungary. Hello, Esther!
Thank you for joining us today. She - Thank you for joining us today.
She's also the president of the Hungarian League of Patients with Rheumatic Diseases. We also have Dr. Bardia Monshi from Austria with us today. Welcome Dr. Monshi.
Hello and thanks for having me.
Thank you for joining us today as well.
Okay, so let's get started then with you, Esther, could you please tell us, uh, about your story? So why you chose to become a patient advocate? Why the topic of mental well-being and quality of life is so important to you as a patient and patient advocate?
Although I don't have pulmonary fibrosis, I have rheumatoid arthritis, I think both pulmonary fibrosis and RA have the same psychological effect because they are chronic and progressive. They change our life. They have serious influence on us mentally and physically too. When my disease started 8 years ago, I, I was full of questions. I wanted to know everything about RA my possibilities, the outcome of the disease, the proper treatment, the side effects of the medications, and mostly how I can cope with this situation. Uh, if I can cope with it at all, I wanted to meet other patients to share our anxieties and experiences.
The doctors and the healthcare professionals were helpful, but they didn't have enough time to answer all questions because their consulting hours are limited. I looked for information on the internet and I found a lot of things, often controversial. I heard about the staff, her patient groups, and I asked my rheumatologist whether there was such kind of organization in our city. She answered no, but there would be one. If I founded one, so I did it. I think mental well-being and quality of life is very important for patients with chronic diseases because they must live lifelong with their disease. They have to change their lifestyle and they have to acquire new skills, which can be challenging. As a patient advocate my goal is to support the others, not only with information and practical advice, but mentally too. I know from my own experience that if we are well-balanced mentally, we can cope with our life better. And, uh, we can manage the disease more successfully.
Absolutely. Oftentimes, uh, the focus is way too much on the physical aspect and not on the mental aspect of these illnesses. To you, Dr. Monshi Could you please tell us about yourself, your background and why you're interested in this topic in particular, as in the psychological support and quality of life for patients with these progressive diseases?
Yes, of course. So, I'm a clinical and health psychologist, and I was also involved in research activities on health-related quality of life of patients. And I'm working as a psychological consultant for over 10, 20 years now and founded together with my wife, the Institute for vital psychology. So one of our focus is personal resilience and of course, mental wellbeing.
Mm-hmm thank you for that. And that was our intro. Let's go a little bit deeper into the subject now. Living with the rare conditions such as pulmonary fibrosis can be difficult and of course cause many different emotions and concerns as well as the physical aspect of things. Today, we're going to be discussing that, the importance of mental wellbeing and how it's connected to the quality of life of a patient with a focus on the support that's available for patients, family, and friends as they navigate their way through the disease journey. Esther, I believe you have a question for Dr. Monshi.
Yes. What do we mean when we talk about mental wellbeing and how can mental health affect a person’s ability to cope with day to day tasks and quality of life?
Yes. Um, well, mental wellbeing includes a lot of dimensions and is a complex phenomenon. To put it simply, it means that we feel good about ourselves, have enough good emotions, the feeling that we can deal with the ups and downs of our lives. And of course, all these factors are crucial for our mental health, but we have to acknowledge that mental wellbeing could also occur in people who are mentally ill. I mean, just think about people in a mania phase. They feel very well, but they are not healthy. So, all in all mental health is the foundation that we can cope with our struggles. And, um, this is of course very important for our well-being.
Mm-hmm, and while most people do understand that it is important to maintain a healthy mindset, it's not always easy to communicate openly about how you're feeling, especially during difficult times. So Dr. Monshi, what would your advice be to patients who do find it difficult to talk about how they feel?
Yeah. You know, we have to translate our feelings into thoughts, our thoughts into words and our words into talk. So of course, this can be difficult. So, for some people, it is valuable to write feelings down or to listen to music that represents their feelings. So first we should take our time to listen deeply into our emotions. After that we should try to open up. If a patient has a rare disease, normally these patients think that nobody can understand them, and that's true in a way, but what I very often try to accomplish with my clients is to find a metaphor or an analogy for their feelings, to which both can relate to and find a common ground about the experience. So, one client who suffered from grief told me that he feels like he's trapped in a dark cave. He's hearing people outside, but is afraid to draw attention to himself. So suddenly we can relate to this picture of being captured and start thinking about ways of relief. So, in short, take your time, ask yourself. I am feeling like this or that and, or my situation is the same as, and start to tell it to someone you can trust.
Mm-hmm. And living with pulmonary fibrosis or other diseases can affect many aspects of a patient's life. Uh, the physical and mental health being closely interlinked obviously. Esther, let's hear from you about your story as a patient of a rheumatoid arthritis, for example, how was your life before the diagnosis for, with work or hobbies? And have you had to make any changes in your life due to your physical limitations? What was the most challenging part for you to accept, for instance?
Before my diagnosis, I lived a rather active life. I walked a lot with my dog, I loved making excursions and to exercise. As a journalist, I went to a lot of places. To keep moving was the basic element of my life. When my disease started, I faced the physical limitations, which was very difficult and disappointing. My daughter was only one year old. She needed a lot of care, but, uh, I couldn't look after her. I couldn't lift her up, couldn't change her nappy or even feed her. I had difficulties to look after myself too. I couldn't walk, cut the bread, open the door, wash my teeth, or stand up from horizontal position. It was frustrating because it's, it's not easy to accept that you are not the same person as you were before your disease. The most challenging part was that I, I couldn't continue my previous life and had to create a totally new lifestyle.
My husband and my family helped me a lot, not only in the daily life practice, but also to stay positive. I started to do autogenic training. It was easy because you don't have to physically move during the training. And I could do it with my condition. It alleviated my pain, helped me to breathe more easily, to relax. And, uh, by means of, uh, imagination exercises, I felt my situation less hopeless. It was a great breakthrough in my attitude when I met other patients from different patient organizations, um, I met patients, for example, who were in worse condition than me, but they looked pleased and, uh, found meaning in their life, despite their disease.
So, you found different ways to stay positive for yourself, and as mentioned by Esther, receiving a diagnosis of a rare disease can cause many, many different emotions and concerns. However, patients and their families aren't always offered psychological support by their healthcare providers. I believe Esther, you have a few questions for Dr. Monshi on that subject.
Yes, my first question is why is it so important that patients and their families get right emotional and psychological support throughout the different stages throughout the journey?
Yeah, first of all, we have to say that psychological and emotional support is absolutely crucial in everyone's life, and especially for patients. The good news is this support does not have to come from professionals. Of course, if the problem, uh, if the problem is severe, like for example, desperation or grief or depression, also professional support is important, but emotional and psychological support can be provided by anyone, even your pet. So why social engagement connection so important? Stephen Porges, a neuroscientist, described it very detailed. In simple words, if we are not alone, it is more likely that we regulate our emotions better, that we can find solutions easier, and that we are able to bear more, but we need the feeling that someone is here for us, that is the foundation of our resilience.
Thank you. Some patients find it difficult to ask for emotional and psychological support. What message would you like to send to them?
Yeah. You know, Christians, uh, Christians love to say it is more blessed to give then to receive, but if this is true, it is very important for all of us to be able to receive because only then the others can give and will be blessed. So, from a psychological standpoint, this is 100% true. Normally we love to be there for others because it gives us the feeling of being important, and this is meaningful. So, if you are able to receive help, you will bless, uh, you will be a blessed for someone else.
So, the main message is that there is nothing to be ashamed of and there is nothing to be embarrassed about. Uh, if you need emotional and psychological support. Um, Esther, based on your experience as a patient and patient advocate, what are the common concerns among patients and their family members living with serious chronic diseases, for example, worries about disease progression and physical limitations as you experienced and their impact on maintaining an active life, also loss of independence, relationships, and family and friends?
I, I think the biggest worries are about disease progression, because the outcome is uncertain. The patients don't know how they can maintain their usual life, how they can cope with the physical limitations. They are afraid that they will lose their jobs because their capacities are not the same anymore. The possibility that they will be disabled is real. They don't want to be burdened on their family and on the society. And this is so depressing. Fears of loss of independence, of family and of friends are coming to, I know patients personally, for example, who lost their job because their employers didn't give them day off for the regular control and women whose husband left them because of their disease.
Mm-hmm, taking care of yourself of course is very important, it is important for all of us, but what can you do to deal with ups and downs in everyday life and difficult situations without feeling overwhelmed as a patient? I believe that Esther also has some questions for Dr. Monshi on that subject?
Many patients with the pulmonary fibrosis are anxious and concerned about their future holds for them. What can people do to deal with uncertainty?
Yeah, of course, such a disease is a very special condition to live with. Um, but also there is uncertainty for every one of us. I had a client whose son was suffering from very severe illness and both knew that he could die every day. So interestingly, the son who also was aware of that could accept it and lived with it, but the father was worrying every day. So, I found a cartoon from Charles Schultz, the inventor of The Peanuts. So, and in this cartoon, Charlie brown and Snoopy are sitting at a lake and are watching the sun go down. Suddenly Charlie says to Snoopy: "You know, Snoopy, someday, we will all die." And Snoopy replies: "Yes, that's true. But on all the other days, we will not." So, the father of this boy puts this comic strip in a frame and enjoys it as a gentle reminder. So, we can live our lives in the moment. And I think this is something we all have to practice every day.
Pulmonary fibrosis and other lung conditions can cause physical symptoms that, uh, make it challenging to perform day to day tasks, as well as hobbies and activities, to the same extent as in the past. What can people experiencing physical limitations do to boost their self-confidence? For example, find new hobbies, do things they enjoy or something like that?
Yeah. You know, I'm working with athletes too, and sometimes that includes injuries and comebacks. So, the most important thing is that you don't get trapped in result orientation. Like two years ago, I could walk 10 miles today. Um, sorry. Like two years ago I could walk 10 miles and today I can only walk two miles. So, stop comparing results. Focus on your process of gaining strength. If you want to reach the top of the mountain, there is no use in telling yourself that three years ago you were already on the peak and now you are not, it is also not good to compare your performance at the beginning of the hike to the performance right now, you just have to focus on the next step. You do what you can, and then you, then you can also start to be proud of it.
Some patients might be worried that their physical limitations will impact their relationship with family and friends. Do you have any advice how they can address and deal with this concern?
Yeah, of course the illness has an impact, uh, on what you can do together, but people love each other for who they are and not for what they can do. So be aware that your physical limitations change what you can do, but not who you are. So, for the daily life together, it is helpful if patients give their loved ones a chance to do things they cannot do together anymore. For instance, they should hi, still hike mountains, but maybe they can bring some nice photos and stories back home that you can share together.
We often hear how important it is to remain true to yourself and, uh, don't become your disease. However, sometimes it is easier said than done. Do you have any advice to patients who struggle to find this inspiration within them self?
Yeah. I mean, this is the path to enlightenment, seriously. The paradox is that you should be true to yourself, but you should also not identify yourself with your disease. So, I think we all need some kind of spirituality. So, spirituality in my definition means that we are embedded in something bigger than ourselves. So, I am more than my body. I am more than my story. I'm more than my disease and I'm even more than I think. So isn't that a lovely meditation.
Mm-hmm, thank you for the questions and insights there. And while family and friends do play a huge role in supporting patients throughout their journey, there are some topics that patients might not want to discuss with family and friends and also vice versa. So, Dr. Monshi, why is it so important for patients to find somebody with whom they can talk about those sensitive topics in a safe and secure environment?
Yeah, as I, as I mentioned, um, it is simple. It is simply because it is more likely that my brain works better to find solutions and to find a positive attitude if I'm not alone. So that doesn't mean that you need for every problem in your life, someone, but it definitely helps if you are not alone with a problem because your brain works better then, if you have someone who is listening. This is really important, you know, because a lot of patient think nobody can help me. Why should I open up to someone? The answer is nobody can take the problem away, but with someone, your brain will work better.
Mm-hmm, and do you also just, um, an extra question from me, do you also, uh, give support to the friends and families who are dealing with the particular patient?
Yeah, of course. Sometimes I'm also giving help to families and the relatives who are dealing with, uh, their patients. And this is also crucial that they, they, um, they can still care for themselves and that they have their mental wellbeing also secured
Mm-hmm, and often the case as well, I assume that friends and family, uh, don't know necessarily what to say, whether they're saying the right thing, whether they're saying the wrong thing in their support of the patient. Uh, Esther, you also have a question for Dr. Monshi.
Yes. What can be done to encourage patients to talk to their doctors and, uh, other healthcare professionals such as psychiatrist and physiotherapists about their concerns?
Yeah, of course I think the first thing is that we should encourage people that it is good to open up and yeah, of course, psych psychiatrist and, and, uh, psychotherapists are professionals. So we should be aware that we can trust these people and, uh, as I mentioned before, it is so important that we can relate to someone that we have someone on our side and yeah, professionals are there for, so just encourage people to open up and to give it a try.
Yes. And why is it so important though, for healthcare professionals to remember exactly that, that they, aren't only treating, let's say a lung or some other organ, but also people and their minds and their families and their everyday lives. What's your opinion on that? Dr. Monshi?
Yeah. This is one of the most delicate parts of the helping profession. Uh, you know, at some point it is important to only look at the lung or another organ. I mean, I don't want the surgeon to think about me as a father of two children during the operation. So, but afterwards, the surgeons should, the surgeon should be able to acknowledge that I'm more than the organ that he or she repaired. So, this is obviously important for the patient, but it is also imp- important for the professional helper, because this makes this work feel so meaningful and fulfilling and is a source of energy. So, we should be aware that we are not only treating an organ as professional helpers that we have always to deal with humans. And this is what gives us the energy to keep it on.
Right. So, turning to you Esther now, and your role as part of a patient organization, how can (Cough) patient, sorry, how can patient organizations play a role in providing emotional support for patients and their families, as in, from the aspect of support groups, peer to peer communication, and that?
I think, uh, patient organizations can play very important role in providing emotional support. The organization have positive effects by themselves. If you see other people with the same disease, you know, that you are not alone with your problems, patients can share their experiences about their daily lives, about practices, they share tricks that help them to cope with their lives. But besides the peer to peer communication, we often invite specialists to our meetings where everybody has possibility to ask questions. My experience is that art therapy helps a lot to elaborate mental problems. I think not only of music or fine arts, but, uh, I think of literature as a bibliotherapy. We use literature during our meetings. If you find somebody in a work of art, um, in a novel, short story, poem, or even in a film or a theater play, who is in the same situation, you get a model for your problems. You can think over your conditions more deeply, and, uh, you can get a possible solution too. If somebody's too shy to speak about her or his problems, but speaks about the characters in the story. Uh, I think eventually this person speaks about her or himself unconsciously, which helps to discover the inside and thoughts. And, uh, I think, uh, this is useful and effective.
That's very interesting. Yes. Thank you for that. Uh, and Esther, you have another question for Dr. Monshi on that subject.
Yes. Uh, from your professional point of view, what’s the benefit of sharing experiences with those on a similar path?
Yeah. As I mentioned, it's absolutely crucial to not be alone when dealing with difficult situations. So one of the most important health factors is social connection. So please go for it.
Maintaining a good mental health is equally important for relatives, caring for a sick loved through up and downs can be rewarding, but also be results in stress, worries, anxiety, and perhaps feelings of hopeless or even guilt for not being able to do more. What can family and friends do to take care of their mental well-being?
Yeah, it is important to realize that you, as a relative, uh, are so important for your sick loved ones. And that is why you have to care tremendously for yourself. Otherwise you will not be able to be there for your sick loved ones on the long journey. So, take care for the helping hands as much as for the people, these helping hands take care.
I suppose each individual has different needs and they need to try and test out different forms of, of therapy, feeling anxious, hopeless, and, uh, fear and limitations when encountering a state of uncertainty is perfectly normal, it's perfectly normal for everybody, even people who do not have diseases. Everybody has the mainta- Everybody has the ability to maintain a healthy mindset and find inspiration to strive.
However, the journey can be less bumpy and more enjoyable if you walk together with others. And so I have one last question for both of you. Maybe I'll start with you, Esther. Uh, if you could use only one sentence or message to encourage other, sorry, if you could use only one sentence or message to encourage other patients, what would it be?
Through the disease journey, we have easier and more difficult periods, but never give up it always works going ahead.
Wonderful. And you Dr. Monshi, what would your message be?
Oh, that was a beautiful, um, that was a beautiful remark of Esther. So, thank you for those. Um, all we always have in life is this moment right now, you know, and there is always beauty and the deeper meaning to find, so let's give it a try and the best is to give it a try together.
Wonderful. On that note, I would like to thank both of you for joining us today, Esther Rozan from Hungary. Thank you for your insights for telling us your story and for being with us today.
Thank you very much.
And thanks also to you, Dr. Bardia Monshi from Austria for your time and your expertise.
Thank you so much.
All the best.