Unseen MS symptoms are often among the most challenging aspects of living with multiple sclerosis. In this episode of the MS-Perspektive Podcast, Hjördís Ýrr Skúladóttir from Iceland shares her deeply personal journey with MS, her work as a patient advocate, and why compassion, openness, and community matter so much.
Hjördís has lived many lives professionally: teacher, police officer, educational leader, and former Chair of the Icelandic MS Society. Her story shows that a diagnosis can reshape life, but it does not have to define or limit it.
She speaks openly about invisible symptoms such as fatigue, bladder problems, and digestion issues, while also reflecting on leadership, healthcare in Iceland, and the importance of helping people with MS feel heard and included.
You are currently viewing a placeholder content from Default. To access the actual content, click the button below. Please note that doing so will share data with third-party providers.
More InformationTable of Contents
1. Introduction & Personal Background
Could you briefly introduce yourself and tell us a bit about your journey—from teaching and policing to your current roles?
Hjördís Ýrr Skúladóttir, Project Manager in Education: I was born and raised in Iceland and have lived in different places across the country, from smaller communities to Reykjavík. I trained as a primary school teacher and worked in education for more than 20 years. Later, I also became a police officer and worked in police education and professional development.
I’ve always enjoyed working with people. Whether it was children, parents, police officers, or people living with MS, I learned that communication and human connection are incredibly important.
Today, I work at the Center of Police Education and Professional Development while also staying involved in advocacy work and the MS community.
You’ve worked in very different environments—from small rural schools to larger urban ones. What have these experiences taught you about people and society?
Hjördís Ýrr Skúladóttir: In many ways, people are the same everywhere. We all want to feel seen, heard, and respected.
Working in a very small community taught me how important relationships are. In a rural school, everyone knows each other. Children grow up together, and there is a stronger sense of connection.
In larger schools and cities, there are more opportunities, but it can also be easier for people to feel invisible. That experience later helped me understand what many people with MS experience emotionally—especially when they struggle with symptoms others cannot see.
How did your MS diagnosis become part of your life story, and how did it shape your personal and professional path?
Hjördís Ýrr Skúladóttir: I was diagnosed with MS in 2015 after years of pushing myself very hard. At first, I kept working and tried to continue life as usual.
But after a few years, I crashed physically and emotionally. Looking back, I understand that I needed to slow down and rethink my priorities.
Eventually, my husband and I decided to make a major life change. We bought a camper van, traveled through Europe with our children, and later spent a year living in Slovenia.
That experience changed my perspective completely. It reminded me that health and quality of life matter more than constantly working.
Today, I still work, but I prioritize my health differently. I work part-time and try to create balance in my life.
What motivated you to take on leadership roles, such as Chair of the Icelandic MS Society?
Hjördís Ýrr Skúladóttir: I think it started with my upbringing. I was raised by a strong mother who taught me not to give up.
When I was diagnosed, the Icelandic MS Society helped me tremendously. I wanted to give something back.
I realized I could use my openness, communication skills, and energy to support others. Even small things—making someone feel welcome or listened to—can make a huge difference.
2. Living with MS & Becoming a Patient Expert
When you think back to your diagnosis, what were the biggest challenges—both visible and “unseen”?
Hjördís Ýrr Skúladóttir: The visible challenges were physical limitations. My legs did not always cooperate, and I realized I could no longer move or work in the same way.
But the unseen symptoms became even more difficult over time.
Fatigue is probably one of the most misunderstood symptoms in MS. Many people think fatigue simply means being tired or lazy, but it is completely different. MS fatigue can take away your energy and your ability to function, even when you want to keep going.
I also think symptoms like bladder problems and digestion issues are not talked about enough. These symptoms can deeply affect quality of life, but many people feel uncomfortable discussing them.
The title of this episode is “Unseen, But Not Unfelt”—what symptoms or experiences do you feel are most misunderstood in MS?
Hjördís Ýrr Skúladóttir: Definitely fatigue. There is still a misunderstanding that fatigue means laziness.
People may look fine on the outside, but internally they are struggling enormously.
I also believe emotional exhaustion is often underestimated. Living with uncertainty and constantly adapting to symptoms can be mentally draining.
Invisible symptoms are real, even if other people cannot see them.
How did you grow into the role of a “patient expert”? What does that term mean to you in everyday life?
Hjördís Ýrr Skúladóttir: To me, being a patient expert means using my lived experience to help others.
I speak openly about MS on social media, in podcasts, and at conferences because I want people to understand that they are not alone.
I also try to normalize conversations around MS. The more openly we talk about invisible symptoms and emotional struggles, the easier it becomes for others to ask for support.
In your advocacy work, how do you balance sharing your personal story with representing the broader MS community?
Hjördís Ýrr Skúladóttir: Honestly, I don’t overthink it. I simply try to be authentic.
I know that every person with MS has a different experience, so I never claim to speak for everyone. But by sharing my own story honestly, I hope others feel seen and represented too.
What has been one moment where you felt your voice truly made a difference?
Hjördís Ýrr Skúladóttir: One moment I will never forget was when someone came into the MS Society office and said that simply being welcomed warmly changed everything for them.
They had felt alone before.
That conversation reminded me that advocacy is not always about large political changes. Sometimes it is about kindness, listening, and helping someone feel connected again.
3. Icelandic Healthcare System & MS Care
For listeners who may not know: how is the healthcare system in Iceland structured, especially for people living with chronic conditions like MS?
Hjördís Ýrr Skúladóttir: Iceland has excellent healthcare professionals, and many people working in MS care are highly educated and committed.
Because Iceland is a small country, there can also be advantages. Communication is often easier, and patients may have more direct access to healthcare professionals.
At the same time, there are challenges. Since the country is small, there are limited resources and not always enough specialists.
What works particularly well in MS care in Iceland, and where do you still see gaps?
Hjördís Ýrr Skúladóttir: One strength is the dedication of the healthcare teams.
But there are still gaps in understanding invisible symptoms and long-term quality of life issues.
Another challenge is access. Many people outside Reykjavík have to travel for appointments and specialized care.
How important is the role of nurses and multidisciplinary teams of healthcare professionals in MS care in Iceland?
Hjördís Ýrr Skúladóttir: MS nurses are extremely important.
In Iceland, there is only one MS nurse for around 800 patients, which is a huge responsibility.
Nurses often become the main connection point for patients. They answer questions, coordinate care, and provide emotional support.
We also have neurologists and other specialists involved, but I think multidisciplinary teamwork could continue to grow.
4. Work, Leadership & Police Background
You are trained as a police officer—how has that experience shaped the way you handle challenges or crises in your life with MS?
Hjördís Ýrr Skúladóttir: Working in policing taught me how to stay calm in difficult situations and how to communicate with very different kinds of people.
It also helped me become less judgmental.
You learn quickly that every person carries unseen struggles, and I think that perspective helped me later in my own life with MS.
Did your MS ever influence your work in policing, either practically or emotionally?
Hjördís Ýrr Skúladóttir: Yes, definitely.
When I was diagnosed, I was already working more in education than active policing, but MS still affected how much energy I had and how I had to organize my life.
I learned that I cannot constantly push myself beyond my limits.
You describe yourself as a strong leader—what does good leadership mean to you, especially in health advocacy?
Hjördís Ýrr Skúladóttir: Good leadership means listening, understanding different perspectives, and helping people feel included.
It also means working together with other organizations. In Iceland, disability organizations often cooperate because together we can have a stronger voice politically and socially.
How do you manage working with very different groups of people—patients, policymakers, professionals—while staying authentic?
Hjördís Ýrr Skúladóttir: My background in education helped me a lot.
As a teacher, you constantly communicate with children, parents, colleagues, and administrators. You learn how to adapt your communication style without losing yourself.
Authenticity matters because people immediately notice when you are not genuine.
5. Community, Advocacy & Impact
Through your work with the MS Society and other boards, what are the biggest needs you currently see in the MS community?
Hjördís Ýrr Skúladóttir: One major issue is understanding that MS symptoms can vary dramatically from day to day.
A person may work full-time one day and struggle to leave the house the next.
There also needs to be more flexibility in workplaces and more awareness about invisible symptoms.
Another important topic is long-term living and care. Many people with MS want to remain independent and stay in their own homes as long as possible.
How can people living with MS become more involved or empowered in shaping healthcare decisions?
Hjördís Ýrr Skúladóttir: Community matters.
Joining organizations, support groups, or advocacy initiatives helps people realize they are not alone.
When patients come together, their voices become stronger politically and socially.
What role do networks, peer support, and community play in living well with MS?
Hjördís Ýrr Skúladóttir: They are essential.
Being part of a community gives people emotional support, practical advice, and hope.
Isolation can become a huge problem with chronic illness, so maintaining social connections is very important.
Are there any projects or initiatives you are especially proud of?
Hjördís Ýrr Skúladóttir: I’m proud of many small things rather than one single achievement.
Sometimes advocacy is about influencing conversations, improving accessibility, or simply helping another person feel supported.
I’m also proud that I always tried to do this work wholeheartedly.
6. Looking Ahead
Which development in the field of MS do you hope to see in the next 5 years?
Hjördís Ýrr Skúladóttir: I hope society becomes much better at recognizing and understanding invisible symptoms.
People with MS should not constantly have to prove that their symptoms are real.
I also hope we continue improving treatment options and quality of life support.
What gives you hope right now—personally or professionally?
Hjördís Ýrr Skúladóttir: Personally, my family gives me hope.
Professionally, I still feel I can make a difference through education, advocacy, conferences, and conversations like this one.
I also feel hopeful when I see people with MS supporting each other and becoming more visible.
6. Looking Ahead
What would you like to share with our listeners?
Hjördís Ýrr Skúladóttir: Be kind to yourself.
Especially after diagnosis, people often become very hard on themselves. Give yourself time to process everything.
And try not to isolate yourself. Community and connection are incredibly important.
Where can people find you online?
Hjördís Ýrr Skúladóttir: I’m active on social media and easy to find online through my name and MS advocacy work.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
And at many more places.
* This text contains affiliate links. This means that I get a small compensation if you buy the product recommended by me through the link. For you nothing changes in the price of the product. And it helps me to pay for the blog and to write new posts.
