This Chronic Disease Awareness Day patient advocate Roxanne Murray strives to ensure no one is left unseen or unheard in the MS, chronic illness and disability community
The Invisibility of MS: What You Don’t See Still Deserves Support
As I approach my 19th year of living with Multiple Sclerosis, I’ve come to understand just how misunderstood this condition can be. MS is often associated with visible signs of disability mobility aids, balance issues, or changes in movement. But for many of us, the most challenging and disruptive symptoms are the ones no one sees.
Profound fatigue, cognitive dysfunction, chronic pain, and sensory disturbances are all part of my daily life with MS. These invisible symptoms can be debilitating, yet they often go unrecognised, dismissed, or completely misunderstood even by those that are meant to support us.
As someone who is Black, femme, queer, and disabled, my experience with MS is shaped by my multiple intersecting identities. These intersections influence not only how I experience the condition, but how I’m perceived, treated, and supported or, more often, not supported by healthcare systems, researchers, and wider society.
Living with Invisible Symptoms
One of the greatest challenges of MS is its invisibility. Fatigue is my constant companion but it’s not the kind of tiredness that a nap or coffee can fix. MS fatigue can be so overwhelming that it makes simple tasks like showering or responding to messages feel almost impossible. Despite this reality it’s often dismissed because there’s no visual cue for others to understand what’s happening.
Cognitive dysfunction often called “brain fog” can affect my memory, information processing, and decision-making. For those of us who are used to being mentally sharp and quick-thinking, this can be deeply unsettling. And because these changes are invisible, they’re often misunderstood or overlooked, leading to frustration, embarrassment, and a profound sense of isolation.
Pain is another symptom that’s easy to overlook. MS pain doesn’t always present as an injury or swelling it can manifest as burning, stabbing, or electric sensations that leave no physical trace. These sensations are real and exhausting, yet they rarely receive the attention or empathy they warrant. I often find myself in spaces in imaginable pain surrounded by people trying to curb my discomfort not even for myself but for the pleasure of the people around me.
The Social and Emotional Impact
Beyond the physical challenges, the emotional toll of invisible symptoms is significant. There is an unspoken pressure to “perform wellness” to appear capable, professional, or cheerful even when I’m experiencing debilitating symptoms. This pressure is especially strong for those of us who don’t fit the stereotypical image of what illness or disability looks like.
The impact of being consistently misunderstood or not believed can lead to self-doubt, anxiety, and depression. It can also result in missed opportunities for care, support, and inclusion both in clinical environments and in research.
The Need for Inclusive, Intersectional Research
Because my experience of MS is inseparable from my identity. Being Black and Queer means I often encounter additional barriers when accessing care or participating in research. Implicit bias, systemic inequality, and a lack of culturally competent healthcare all contribute to a sense of being unheard or unseen.
That’s why inclusive, intersectional research is so critical. We need studies that go beyond the standard demographics and consider how race, gender identity, sexuality, and disability intersect to shape the MS experience.
In particular, more attention must be paid to the invisible symptoms of MS how they impact people across different communities, how they’re communicated in clinical settings, and how they influence quality of life.
A Call to Action
If we are truly committed to improving outcomes for people living with MS, then we must acknowledge and validate the full range of experiences — including the invisible ones. Healthcare professionals, researchers, and pharmaceutical companies all have a role to play in making this happen.
This means:
• Prioritising invisible symptoms in research design and clinical trials.
• Engaging diverse voices at every stage of the research process.
• Listening to patients without demanding visible proof of their experience.
• Recognising that support must be shaped by what people feel, not just what can be seen.
Because MS does not always manifest in visible ways, that doesn’t make the experience any less real or any less deserving of understanding, investment, and support.
