How do disabled people live in Luxembourg

You were diagnosed with multiple sclerosis in your twenties. What were the most important ways this changed how you relate to your body, your work and everyday life in Luxembourg?

A diagnosis in your twenties is like having the floor shift beneath you just as you’re expected to “build your future.” MS forced me to renegotiate my relationship with my body - not as an enemy, but as a partner with fluctuating limits. I learned to pace myself, to plan for unpredictability, and to let go of the idea that productivity defines my worth.

In Luxembourg, this also meant rethinking how I work: energy management, flexible arrangements, medical appointments woven into daily life, and becoming unapologetic about boundaries. Everyday tasks - from navigating public transport to managing administrative paperwork - became logistical challenges. But they also became reminders that society’s structures often don’t account for people like me.

You’ve written about “systems that were never designed with us in mind”.

When I say our systems weren’t designed with us in mind, I’m referring to structures built around able-bodied norms. Disabled people are then expected to navigate within those limits.

These issues don’t stem from a lack of goodwill; progress is happening. But they show how systems still ask disabled people to adapt to them, rather than adapting to us.

Invisible disabilities are often misunderstood. What does it mean in practice to live with an invisible disability here – at work, in public spaces, in contact with institutions?

Living with an invisible disability means constantly being assessed by others through a lens that doesn’t match your reality. People see a “healthy” exterior and assume capacity, energy, stability and availability.

At work, this might mean colleagues questioning your need for rest or flexible hours. In public spaces, it can manifest as judgement when you sit in priority seating or use accessible services. In institutions, it often means having to “prove” you’re disabled enough for support - because your challenges aren’t visibly obvious.

A simple example: using a mobility aid one day and not the next can trigger scepticism, even though fluctuation is the norm with conditions like MS.

You mentioned the psychological toll of navigating bureaucracy and fragmented services. What are the most exhausting parts of this process for patients and their families? If you could change just one thing in how services are organised in Luxembourg, what would it be?

What wears people down most is how slow and fragmented the system is, especially when it comes to employment. Decisions on salary participation, redeployment or workplace adaptations can take months, leaving people in prolonged uncertainty. During these delays, job offers disappear, income becomes unstable, and many are pushed into financial insecurity or even poverty - not because they can’t work, but because the mechanisms meant to support them fail to function in time.

If I could change one thing, it would be to make these processes fast, coordinated and accountable. When support is timely and predictable, people can focus on working and living, instead of fighting a system that should be helping them.

How does the Luxembourg healthcare system treat patient expertise? When you sit at the table as a “patient expert”, do you feel your experience is recognised as knowledge – or do you still need to justify why you should be heard?

It’s improving, but patient expertise is still unevenly valued. Some professionals fully recognise the insight that lived experience brings; others see the “patient” label before they see the “expert.” There is still a need to justify why our perspective matters, even though it carries forms of knowledge no textbook can provide.

Patient expertise should complement clinical expertise - not compete with it. When the system embraces this, outcomes improve for everyone

You work a lot around youth participation and invisible disabilities. What specific challenges do young people with chronic illness or disability face in Luxembourg – at school, university or at the start of their career?

Young people face a unique combination of pressure and invisibility. At school or university, accommodations often exist in theory, but - much like many support mechanisms in Luxembourg - they can be slow, inconsistently applied or dependent on individual understanding. We are on the right path, with growing awareness and more educators willing to adapt, yet many students still find themselves navigating fluctuating symptoms in environments that can misunderstand fatigue, cognitive overload or sensory needs. This gap between intention and everyday practice can easily lead to stigma or assumptions of laziness, especially for those whose disabilities remain largely unseen.

When they enter the workforce, these structural issues become even more significant. As I wrote in a recent op-ed, the mechanisms intended to support disabled people - whether salary participation, adaptations or redeployment - can take months to materialise. For young adults at the beginning of their careers, such delays can mean missed job opportunities, rigid probation periods without adjustments, and financial instability long before support is approved. It’s often not their capacity or motivation that limits them, but systems that move more slowly than the realities they face.

This leaves many young people caught between striving for independence and needing timely, predictable support in a society that still expects linear, uninterrupted progress. Their potential is strong; the structures around them simply need to become more responsive to it.

For many of our readers, Luxembourg is still “new territory”. What would you say to someone who has recently moved here with a chronic illness or disability and is feeling lost in the system? Are there first steps, services or organisations you’d recommend they turn to?

First: You are not alone - feeling overwhelmed is normal. Luxembourg’s systems can feel complex even to people who grew up here, so it’s entirely understandable to feel lost when you’ve just arrived.

Navigating Luxembourg becomes far easier when you’re not doing it alone. Reaching out early can save a great deal of stress and help you feel anchored in a system that may initially seem overwhelming.

From your experience, how inclusive are workplaces in Luxembourg today – in terms of flexible arrangements, understanding of fatigue, access needs, etc.? Do you see positive examples that could inspire others?

There is progress, but inclusion in workplaces is still far from universal. Many employers are open to accommodations, yet they often lack clear guidance or timely support from the systems around them. As I recently highlighted for IDPD, when the procedures that should facilitate inclusion are slow or unpredictable, even motivated employers struggle to act. This creates uncertainty for both sides and leaves disabled workers carrying the weight of explaining, waiting and adapting.

Fatigue, cognitive symptoms and fluctuating capacity are still not widely understood, which means employees often need to educate others while managing their health. Despite this, there are genuinely encouraging examples: workplaces that offer flexible scheduling, hybrid work, quieter environments, adaptive tools and a culture grounded in trust rather than suspicion. These show that inclusion is entirely achievable when understanding and structure come together.

The goal now is to make these positive practices commonplace rather than exceptional - by pairing employer goodwill with systems that enable timely, practical implementation.

What are the biggest myths or misconceptions about disability and chronic illness that you would like to debunk for the general public?

A few persistent myths continue to shape how disability and chronic illness are perceived:

• “You don’t look sick, so you must be fine.”
• “Fatigue just means being tired.”
• “Accommodations give unfair advantages.”
• “Disability is a personal tragedy rather than a societal responsibility.”
• “People just aren’t trying hard enough.”
• “I was sick once and managed fine - so why can’t you?”

These last assumptions are especially harmful because they reduce complex, fluctuating conditions to questions of effort. They often arise from low levels of empathy, and today’s climate of financial uncertainty and inflation doesn’t help - when people feel pressured themselves, it becomes harder for them to imagine the realities others are navigating.

But disability is part of human diversity. What limits people is rarely the diagnosis itself, but the physical, social and institutional barriers built into the world around them. When we remove those barriers - and replace judgement with understanding - people are able to participate fully and thrive.

In your view, what does truly accessible and inclusive policy look like? Are there concrete measures (legal, architectural, digital, social) that you would like to see implemented or strengthened in Luxembourg?

Truly accessible and inclusive policy is proactive, predictable and enforceable. It doesn’t wait for people to struggle before offering support, and it doesn’t rely on individual goodwill to function. Inclusion means designing systems that work reliably for everyone - not just in principle, but in everyday practice.

For policy to be truly inclusive, it must translate rights into timely, tangible changes that make daily life easier, not harder. Inclusion becomes real when structures consistently support people - rather than requiring people to adapt to failing structures.

What can friends, colleagues, neighbours and family members do better in everyday life to support people living with chronic illness or disability – without being intrusive or paternalistic?

Good allyship starts with listening without assuming. Many people rush to problem-solve or offer advice, but what most of us need is understanding, patience and respect for our own expertise about our bodies. Ask what support is helpful rather than guessing and accept that needs may change from day to day.

Allies can also make a big difference by believing people the first time they explain their symptoms or limits, even when those symptoms are invisible or fluctuate. Avoid comparisons like “I was tired too” or “I had something similar and managed - these comments minimise the reality of chronic illness and place the responsibility back on the person who is already navigating a complex reality.

In everyday life, support can be simple: being flexible with plans, offering help without insisting, creating low-pressure environments, checking in without prying, and being mindful that fatigue, sensory overload or pain aren’t always visible.

Above all, real allyship means recognising that the problem is rarely the person - it’s the barriers around them. When friends, colleagues and family members approach support with humility, curiosity and trust, they help create the kind of social environment where inclusion becomes not just possible, but natural.

You work at the intersection of advocacy, communication and psychosocial support. What keeps you motivated and grounded in this work, especially when change feels slow?

What keeps me motivated is the impact I see on an individual level. Structural change can be painfully slow, but when someone tells me that a conversation, a resource, or a piece of writing made them feel understood or helped them navigate a barrier, it reminds me why this work matters. Those moments of connection are immediate, even when policy shifts are not.

I’m also grounded by the communities I work with - people who live with chronic illness or disability and still show remarkable resilience, creativity and humour while navigating systems that often make life harder than it needs to be. They deserve structures that work, and that belief keeps me steady during the slow parts.

Finally, I’m motivated by a sense of responsibility to my younger self, who struggled to find support and language for experiences that were often dismissed or misunderstood. If I can make things clearer, kinder or more accessible for someone else, then the effort is worthwhile - even when progress takes time.

Looking ahead, what are your hopes for the future of accessibility and inclusion in Luxembourg? Are there small signs of progress that give you optimism?

I hope for a Luxembourg where accessibility is not something we negotiate for, but something that quietly supports us in the background of our daily lives. A future where systems respond as swiftly as people’s needs change, where employers instinctively design work with diverse bodies and minds in mind, and where inclusion is woven into the fabric of policy rather than added as decoration. I imagine a society where people living with disabilities no longer have to justify their needs, their pace or their presence - a society that recognises our full humanity without hesitation.

And yes, there are signs that give me genuine optimism. You can feel a shift: more educators asking the right questions, more employers willing to adapt, more institutions acknowledging invisible disabilities with sincerity rather than symbolism. Young disabled people are claiming space with confidence, and patient expertise is slowly being treated as a vital source of knowledge rather than an afterthought. These moments may be small, but they bloom like early spring flowers - quiet, steady indicators that the landscape is changing.

Progress may sometimes feel slow, but these blossoms of awareness and openness make me believe that a more accessible, compassionate Luxembourg is not only possible but already beginning to take root.

Finally, is there anything we didn’t ask that you feel is important to share with our readers about living with MS, disability rights, or inclusion in Luxembourg?

Perhaps just this: living with MS or any chronic illness is not solely a story of limitation. It’s also a story of adaptation, community, resilience and creativity. People often assume disability is defined by what someone can’t do, when in reality much of the difficulty comes from the barriers society places around us - slow systems, inaccessible environments, rigid procedures, or assumptions that misinterpret our lived realities.

If there’s one thing I want readers to take away, it’s that inclusion is not about fixing disabled people; it’s about fixing the structures that exclude us. When systems are responsive, when workplaces are flexible, when public spaces are designed with diverse needs in mind, disabled people don’t just “cope” - we thrive. Not despite our disability, but alongside it.

And while Luxembourg still has work to do, there is genuine potential here. With accountability, empathy and a willingness to listen to those with lived experience, we can build a society where inclusion is not symbolic, but something people feel in their daily lives.