The fear of being judged is overwhelming

I’ve faced a range of negative judgments about my MS, often because my symptoms aren’t always visible. When I travel and use special assistance, I notice people giving me looks that seem to say, ‘She doesn’t look disabled.’ It makes me feel very self-conscious. I’ve offered to show staff at the airport a medical letter to confirm my condition, just to avoid judgment.

Experiences like this make me feel anxious and on edge, constantly worrying about how others perceive me. The assumptions and misconceptions about MS, combined with the fear of being judged, can feel isolating.

I stay at home rather than be judged by others for not ‘joining in’ 

Symptoms like slurred speech have led to people trying to hurry me or finish my sentences. It can be humiliating and makes me feel dismissed. These kinds of judgments are exhausting and make me anxious about sharing or asking for support. 

The fear of being judged has been overwhelming at times. I’ve stopped attending many social events, particularly longer ones or evening outings, because my MS is so unpredictable. It can change within minutes. I worry that I might need to leave early, sit down frequently, or that I won’t be able to stand for long. And once fatigue sets in, it intensifies all my other symptoms.

Then when I’m unable to attend gatherings or participate in things, it can be interpreted as me being difficult, vague, or simply not interested.

Alongside managing the physical impact, I carry the anxiety that others might see me as lazy, exaggerating, or even dull. That fear often means I opt out altogether. I’ve missed opportunities for travel, celebration, and professional development because I’m concerned I’ll be perceived as unreliable or incapable.

I’ve learned to not let others’ judgements define me

I used to end up feeling frustrated with myself, as well as guilty and stressed for letting people down. That sense of pressure can make my symptoms worse, creating a cycle that’s hard to break.

But over time I’ve learned to set boundaries. That it’s okay to say ‘sorry, I can't’, as my needs and health is a priority.

On days when communicating is difficult, or walking unaided is a challenge, it can feel exhausting having to constantly explain myself. But I’ve learned to not let others’ judgements define me, Instead, I try to be open about my needs when necessary. This approach allows me to get the support I need while still living a fulfilling life with MS.

I wondered if I should lower my expectations of myself due to my MS

When I decided to return to education, my family were understandably concerned about how I would cope with the unpredictability of my MS. They worried not only about fatigue and relapses, but whether I would realistically be able to manage the workload. There were questions about whether it might be ‘too much’ for me now, and whether I was setting myself up for disappointment. Although these concerns came from a place of love and protection, they amplified my own doubts. I had been questioning my sense of purpose since my diagnosis – I wondered if MS meant I should lower my expectations of myself.

The uncertainty of the condition can make planning ahead daunting. I worried about keeping up academically, managing fatigue, and coping with cognitive challenges on difficult days.

Finding a way to get back to study 

But, thankfully, the college has been incredibly supportive. Adjustments were discussed openly, and I felt listened to rather than limited. Having flexibility and understanding has meant I can balance my health alongside my studies. Returning to education has restored my sense of direction and confidence. It's reminded me that while MS may change how I do things, it doesn’t mean I can’t do them. 

MS is a very misunderstood condition because it affects everyone differently. It’s extremely unpredictable — symptoms can appear or change within minutes — and that unpredictability can make daily life challenging. For those who know someone with MS, remember that most symptoms aren’t visible. But those symptoms can still have a big impact on how a person feels and functions. Understanding and patience go a long way in supporting someone living with MS.

Encouraging people to #MSThinkAgain 

We’ve teamed up with seven of the UK’s biggest MS charities to challenge harmful assumptions. And help people living with MS to be heard.  

Find out how you can get involved in the #MSThinkAgain campaign.