Breaking it Down: A Multiple Sclerosis Podcast – MS Awareness Week 2025 – MS Conversations

Podcast Host: MS Trust
Episode Date: April 30, 2025
Hosts: Nick and Helena
Guests: Claire (MS Trust Head of Information & Engagement), Amy (Founder & CEO of MS Together)

Episode Overview

This special episode marks MS Awareness Week 2025, focusing on the theme of “MS Conversations.” Hosts Nick and Helena bring together voices from across the MS community—experts, patients, and advocates—to explore the importance, challenges, and impact of conversations about living with MS. The discussion centers on disclosure, navigating tough talks with family, friends, employers, and health professionals, and the vital role community support plays in empowering people with MS to share their stories and seek help.

Key Discussion Points and Insights

1. Purpose & Theme of MS Awareness Week 2025 (00:34)

• Unified Campaign: The MS Trust joined with partner charities (MS Society, MS Together, MSDK Neurotherapy Network, Overcoming MS, Shift MS, TalksWithMS) to promote “MS Conversations.”
  • Goal: Encourage open and supportive dialogues about MS within the MS community and with broader society.
• Why Focus on Conversations?
  • People with MS often face difficult and sensitive conversations—disclosing the diagnosis, explaining symptoms, or requesting support.
  • “We’re here to say you’re not alone and it’s good to talk.” — Nick (00:58)
• Campaign Participation: Use the hashtag #msconversations on social media to join and spread awareness.

2. MS Trust Resources to Support Conversations (Interviews with Claire, 03:56–15:01)

Claire, Head of Information & Engagement at MS Trust, outlines resources to help people with MS open up:

a. Disclosing Your Diagnosis (04:34)

• Personal and Challenging: There is no obligation to tell anyone except authorities like insurance or DVLA, but sharing can help garner support.
• Resource Highlight: “Telling People About Your MS” – a leaflet with considerations and strategies.
• Quote:
  “It might be helpful to be quite open about when you don’t know and what you don’t know.”
  — Claire (05:19)

b. Conversations with Family and Friends (06:44)

• Allies Matter: Identifying supportive figures is key.
• Honesty & Boundaries: Open communication about uncertainties; setting expectations for children, partners, friends.
• Invisible Symptoms: Addressing misunderstandings around fatigue, adjusting expectations with others.
  • “People can’t read your mind, whether you have MS or not… if you don’t tell them what’s going on, they won’t know and if they don’t know, they won’t be able to support you.” — Claire (08:17)
  • Strategies for responding to unsympathetic reactions, especially for hidden symptoms like fatigue.

c. Talking about MS at Work (10:43)

• Disclosure at Work: Often a significant challenge—balancing privacy with need for understanding and adjustments.
• MS Trust Booklet: Provides templates, options for reasonable adjustments, and employer information about the Equality Act and Access to Work schemes.
• Quote:
  “It gives your employer some information… and the response has been very positive.” — Claire (11:32)

d. The Power of Peer Support (12:30)

• Online Community: MS Trust’s vibrant Facebook group offers “peer to peer support” that helps battle isolation.
  • “It’s so important to stop people with MS feeling alone because it’s more common than people think.” — Claire (13:10)
  • The value in reading, sharing, and ‘lurking’ for vicarious support.
  • Both positive and negative experiences shared—community support, emotional validation, practical advice.

e. Resource Summary (14:45)

• Everything discussed is accessible via the MS Awareness Week webpage.
• Final Thought:
  “We need more people to understand the diversity of experiences with MS and we need to be talking about MS in lots of different ways.” — Claire (10:16)

3. Real-Life MS Conversations: Personal Experiences (Helena & Amy, 15:46–41:09)

A candid conversation between Helena (MS Trust) and Amy (MS Together) covers their personal journeys with MS and the practical, emotional realities of communication.

a. First Conversations at Diagnosis (16:23)

• Shock & Misinformation:
  • Amy’s GP dismissed the possibility of MS due to her age:
    “No, definitely not, you’re far too young to have MS” — Amy (16:55)
• Family Reactions:
  • Helena’s mother was scared due to past experiences with relatives who had MS; discussing MS with her was harder than receiving the diagnosis itself.
  • Amy’s mother was present for the diagnosis and deeply affected.

b. Telling Friends, Partners, and Colleagues (18:24)

• Awkwardness and Uncertainty: Friends often unsure how to react or what MS means.
• Workplace Disclosure:
  • Helena: Supportive manager and HR but initial feelings of uncertainty:
    “They sort of just sat me down and they said, what do you need? And I was like, I don’t know what do I need?” — Helena (20:33)
  • Amy: Disclosed MS at a job interview, felt pressured to downplay its impact.
  • Variable colleague reactions; some are supportive, others awkward or overly eager to “fix” the problem.

c. Communication Tools and Strategies (24:04)

• Amy’s Blog: Using a blog and social media to update friends/family and destigmatize conversations.
  • “It actually really helped with those conversations that I was then having with friends and family and even strangers…” — Amy (24:13)
• Dating after Diagnosis: Leveraging openness on social media to filter for understanding partners.
• Helena’s Instagram: Reflection on ‘oversharing’ and its impact.

d. Peer-to-Peer Support: Forums and Social Media (26:59)

• Finding Community:
  • Online forums and groups are lifelines for information, understanding, and validation.
  • “You don’t fully get it till you get it.” — Amy (28:46)
  • Learning from shared experiences explains and normalizes new or frightening symptoms (“MS hug”).

e. Navigating Health Professional Conversations (28:59)

• Premature Discussions: Frustration with health professionals’ focus on family planning rather than other life plans (e.g., travel).
  • “As someone in their 20s, why are we only getting asked if we want to have a baby?” — Amy (29:50)
• Treatment Planning: Impact of life stage and personal goals on treatment choices, and the need for broader, more individualized discussions.

f. Treatment Changes & Emotional Toll (32:43)

• Both Amy and Helena describe the emotional weight of having to change treatments, and how it evokes feelings similar to initial diagnosis.
  • Decision-making is overwhelming, and peer accounts heavily influence choices.

g. Diversity and Individuality in MS Experiences (37:02)

• Everyone’s journey with MS is unique—symptom severity, treatments, abilities differ widely.
  • “It’s really hard to say, oh, this person is the face of MS because it’s so different… we’re all MS, aren’t we? But it’s just very different.” — Helena (37:42)
• This variation makes it especially challenging to communicate about MS to others.

h. Tips for Having (or Not Having) MS Conversations (39:08)

• Amy’s Advice:
  • Find and talk to other people living with MS for support, ideas, and reassurance.
  • Be as open as you feel comfortable; communicate your support needs honestly.
• Helena’s Advice:
  • It’s perfectly ok to ‘lurk’ before joining the conversation; MS Trust’s Facebook is a good place to start.
  • “If you’re not ready to talk to someone, it’s okay… read what other people have said, and maybe then you can get some ideas.” — Helena (39:25)
  • You don’t have to disclose to everyone—start where you feel safest.

i. The Value of Supportive Communities (41:09)

• Both MS Trust and MS Together—and numerous peer groups—are there to help facilitate conversations of all kinds, at any stage.

Notable Quotes & Memorable Moments

• “We’re here to say you’re not alone and it’s good to talk.” — Nick (00:58)
• “People can’t read your mind… if you don’t tell them what’s going on, they won’t know and if they don’t know, they won’t be able to support you.” — Claire (08:17)
• “No, definitely not, you’re far too young to have MS.” — Amy, recounting a GP’s words before diagnosis (16:55)
• “It was harder to talk to my mom about it than when the doctor gave me the news.” — Helena (18:02)
• “You don’t fully get it till you get it.” — Amy (28:46)
• “As someone in their 20s, why are we only getting asked if we want to have a baby?” — Amy (29:50)
• “It’s really hard to say, oh, this person is the face of MS because it’s so different… we’re all MS, aren’t we? But it’s just very different.” — Helena (37:42)

Practical Resources for Listeners

• MS Trust Support:

  • Comprehensive guides on disclosure, family conversations, and workplace adjustments.
  • Active peer support via Facebook and online communities.
  • Links and downloadable resources available via the MS Awareness Week webpage.

• Support Contacts:

  • Helpline: 0800-03-23839 (Mon–Fri, 10am–4pm)
  • Email: ask@mstrust.org.uk

• Community Involvement:

  • Facebook groups for general MS support and for people with advanced MS.
  • Social media campaign: #msconversations

Timestamps for Important Segments

• (00:34) – MS Awareness Week and purpose of “MS Conversations”
• (03:56) – Interview: Claire on MS Trust resources
• (04:34) – Strategies for disclosure
• (10:43) – Conversations at work
• (12:30) – Value of online peer support
• (15:46) – Helena & Amy’s personal MS conversations
• (16:55) – Early (mis)diagnosis conversations
• (20:33) – Workplace disclosure experiences
• (24:04) – Using blogs/social media to communicate
• (28:46) – The value of finding peers
• (29:50) – Frustrations with health professionals
• (32:43) – Emotional challenge of treatment changes
• (37:42) – Diversity in MS experiences
• (39:08) – Tips for starting (or not starting) MS conversations
• (41:09) – Community resources for opening up

Conclusion

The episode underlines the importance—and the complexities—of MS conversations, whether with loved ones, health professionals, employers, or within the MS community itself. Honest dialogue, support networks, and access to specialized resources are key to empowerment, resilience, and better outcomes for people living with MS. Through shared stories and practical tips, the podcast demystifies MS communication and encourages everyone, wherever they are in their MS journey, to talk—when they’re ready.