“Alongside managing the physical impact of MS, I carry the anxiety that others might see me as lazy, exaggerating, or unreliable.”
A Co Down woman living with multiple sclerosis (MS) has opened up about the judgement and assumptions she faces every day.
Jordanna Kalla from Holywood was speaking as new research reveals the scale of stigma experienced by people like her with MS across Northern Ireland.
Jordanna, 44, lives with relapsing remitting MS and has chosen to share her experience to mark the start of MS Awareness Week, April 20-26, to help challenge harmful misconceptions and encourage people to think again about the condition.
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Jordanna said: “People who know I have MS often assume that I’m ‘fine’ because I don’t necessarily look unwell. When I can’t attend gatherings or take part in things, it can be interpreted as me being difficult or simply not interested. Comments like ‘just have a rest and you’ll be okay’ can feel dismissive, as though the complexity of my symptoms isn’t fully understood.
“Alongside managing the physical impact of MS, I carry the anxiety that others might see me as lazy, exaggerating, or unreliable. That fear has meant I’ve missed opportunities for travel, celebrations and professional development, because I’m worried about how I’ll be perceived.
“When I travel and use special assistance, I often notice looks that seem to say, ‘She doesn’t look disabled.’ I’ve even offered to show a medical letter just to avoid being judged. On one occasion, I was questioned about my disability badge on a train. Experiences like that can make you anxious and constantly aware of how others perceive you. The fear of being judged has felt overwhelming and isolating at times.
“Many MS symptoms, like fatigue, pain and brain fog, are completely invisible. You can look fine on the outside but be struggling on the inside. Because others can’t see it, there can be an assumption that you’re exaggerating or being lazy, which is exhausting and can make you avoid situations altogether.”
Jordanna’s experience reflects the findings of a new survey of people living with MS, which reveals the ongoing and damaging impact of judgement and misunderstanding surrounding the condition.
The survey, conducted by leading MS charities as part of this year’s MS Awareness Week campaign, MS Think Again, gathered responses from more than 1,600 people living with MS across the UK.
In Northern Ireland, six in ten people (60%) who completed the survey said they have felt judged or treated differently because of their condition, while more than half (52%) reported feeling stigmatised by politicians for claiming the financial support they need.
The impact of judgement is also affecting work and employment. Almost half (48%) of NI respondents said they have felt underestimated at work because of their MS, while a third (33%) said others have assumed they can’t work at all. Fear of being judged or treated differently has prevented almost half (45%) from disclosing their MS diagnosis to others, and four in ten (40%) said it stopped them from applying for a job.
Judgement and misunderstanding also extend into everyday life. Over half (58%) of people with MS in Northern Ireland said they have been questioned or challenged when using accessible facilities, and the same proportion said they have avoided using those facilities for fear of being judged.
Although many people with MS rely on disability benefits such as Personal Independence Payment (PIP) to help them stay in work, negative assumptions remain common during assessments.
Of the 77% of respondents in Northern Ireland who had applied for benefits: 59% felt their invisible symptoms weren’t understood or taken seriously during a benefits assessment; 59% felt the fluctuating nature of MS wasn’t understood or taken seriously during an assessment; 54% said they were made to feel like they were lying or exaggerating the impact of their MS during an assessment; 52% said assessors made incorrect assumptions about their condition.
More than 5,300 people live with MS in Northern Ireland. Most are diagnosed in their 30s and 40s. Symptoms differ for everyone and are often invisible, with 97% of respondents in Northern Ireland experiencing at least one invisible symptom, such as fatigue, brain fog or pain.
Of those, almost two thirds (64%) said they have been made to feel like their invisible symptoms weren’t real. Nearly all respondents (92%) felt that a lack of knowledge about MS contributes to incorrect assumptions or judgement.
Stewart Finn, Country Director of MS Society Northern Ireland, said he findings are hard to read and a reminder that not all disabilities are visible.
“MS can be debilitating, exhausting and unpredictable, yet we continue to see remarkable resilience and strength within our community,” he added.
“This week, as people affected by MS come together in Parliament Buildings with policymakers, researchers and healthcare professionals to mark 70 years of MS Society Northern Ireland’s support, these experiences underline why challenging judgement and misunderstanding remains as vital as ever.
“We’re encouraging everyone to take time this week to listen, learn and understand MS before saying something that could hurt or offend. No one with MS should be challenged or questioned about their condition.”
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