Breaking It Down: How Do You Come to Terms with a Progressive MS Diagnosis?

Podcast: Breaking it Down – A Multiple Sclerosis Podcast
Host: MS Trust
Episode Date: March 17, 2025
Main Hosts: Helena and Nick

Episode Overview

In this episode, Helena and Nick tackle a profoundly emotional and practical question: How do you come to terms with a progressive MS diagnosis? Through expert advice and real-life stories, they explore the emotional impact of receiving such a diagnosis, strategies for adjustment and coping, and the importance of support networks. The episode features:

• An in-depth conversation with Dr. Angeliki Bogosian, health psychologist and researcher.
• Personal experiences from people living with progressive MS: Yvonne (primary progressive MS) and Adam (secondary progressive MS), along with his wife Sharon.

Key Discussion Points & Insights

Understanding the Psychological Impact of a Progressive MS Diagnosis

Guest Expert: Dr. Angeliki Bogosian, Health Psychologist
Segment Start: [03:01]

Initial Reactions and Emotional Processing

• Diverse Emotional Responses: The moment of diagnosis is often highly charged—people may feel shock, numbness, relief at finally having a name for their symptoms, embarrassment, anger, or anxiety about the future ([07:05]).
• Space to Process: Well-meaning attempts to reassure (“Be positive!”) can backfire—people need space and validation for their own emotions.
  • Quote:
    “People feel this pressure to say something and to make the other person feel okay … but they might unintentionally cause more harm than help.”
    — Dr. Angeliki Bogosian [04:50]

The Myth of the Single Reaction

• There is no “normal” way to react; every person’s response is unique ([07:05]).
  • Some feel grief; others are relieved to get an answer.

Coping Strategies and Adjustment

• Fight, Flight, or Acceptance: Many people try to fight or ignore the diagnosis, but Dr. Bogosian recommends a “third way”—space for emotions without fighting or running from them ([08:53]).
  • Quote:
    “There is a third option … let those emotions and feelings that come up when you have the diagnosis and give some space, not running away from them, but not also fighting with them.”
    — Dr. Angeliki Bogosian [09:40]

Transitioning from Relapsing to Progressive MS

• The transition can feel like a second diagnosis, but often people have sensed it coming ([12:16]).
• Useful strategies include:
  • Proactive planning (home adjustments, financial planning).
  • Maintaining social roles and avoiding isolation.
  • Getting involved in MS communities and helping others.
• Past psychological issues can re-emerge with a new diagnosis ([16:17]).
• Feelings of helplessness and the misconception that "nothing can be done" are common—but not accurate ([17:40]).

Advice for Living with Ongoing Change and Identity Challenges

• Flexibility is Key: Use a “toolbox” of coping strategies that can be adapted over time as MS and one’s personal circumstances change ([20:09]).
• Scaling Back or Adapting: Continue meaningful activities by adjusting how you participate or by seeking help ([22:00]).
• Core Values: Focus on what matters most to you (e.g., being supportive to family), and find alternative ways to meet those values despite physical changes ([23:50]).
  • Quote:
    “Identifying what is really important for you … and finding other ways to satisfy those … helps with the sense of identity.”
    — Dr. Angeliki Bogosian [24:55]

Psychological Therapies and Self-Management

• Explore different therapeutic approaches; CBT and Acceptance and Commitment Therapy (ACT) are widely used and increasingly available via the NHS ([26:41], [31:01]).
  • Quote:
    "It is important to find the one [therapy] that matches and speaks to you and you feel comfortable with."
    — Dr. Angeliki Bogosian [26:41]
• Mindfulness improves anxiety, depression, and quality of life—and benefits often persist beyond courses ([31:42]).
• Expressive writing and identifying core values through resources like Russ Harris’s The Happiness Trap are also valuable ([34:30]).

Dealing with Uncertainty About the Future

• It's uncomfortable, but avoiding uncertainty is rarely helpful; instead, see it as a space for possible new discoveries and opportunities ([38:45]).
  • Quote:
    “Uncertainty is … not comfortable, but at the same time, it's nothing bad … Maybe this fluidity will lead to uncovering new relationships, or help you reprioritize.”
    — Dr. Angeliki Bogosian [39:39]

Personal Stories: Real-Life Experiences

Yvonne’s Story – Primary Progressive MS

Segment Start: [42:57]

• Long delay in diagnosis: symptoms overlooked, attributed to other causes.
• Emotional impact:
  • “When that came, it was a bit of a body blow … but the bigger shock came though when I was told there was no treatment for it.” [46:40]
  • Period of depression, grief, and “why me?” thinking.
  • Eventually shifted to anger, active coping, and sharing her story—including skydiving and emailing her whole workplace about her diagnosis.
• The importance of support from MS nurses and finding helpful information ([49:48]).
• Adjustment took time: “There was at least six months where I was probably clinically depressed … then I decided to get angry at it … you go through those stages of losing something, and what you’ve lost is your health.” [49:48]
• “Live your life; don’t let the MS become your sole focus … gradually it’s still always with me, but it’s back here now and I can choose to let it in or not.” ([57:23])
• Practical tip:
  • Keep healthy and maintain function where you can.
  • Don’t attribute every symptom to MS—investigate issues thoroughly.
  • Build a support network with MS nurse, GP, and neurologist.
• Quote:
  “You have your own MS, and regardless of the label, you and it will go on a journey together that will be unique to you.”
  — Yvonne [48:40]

Adam & Sharon’s Story – Secondary Progressive MS

Segment Start: [60:46]

• Adam’s diagnosis journey was long and frustrating; felt disbelieved and dismissed.
  • “I was made to feel like a hypochondriac … all in my head.” [62:31]
  • Relief when diagnosis was finally named:
    “When the doctor said, ‘I think you’ve got MS,’ I actually went, ‘Oh, yes!’ … because it’s not cancer or motor neuron disease.” ([63:02])
• Sharon on the family’s struggle:
  • "That went on for a long, long time... Every month, we were like, come on, you've got to just pull yourself together." ([66:05])
  • The shock (and semi-relief) when diagnosis came:
    "When Adam was finally diagnosed... I want to go into my old work and tell them I've got MS, I'm not lazy, I was ill." ([68:19])
• Transition to secondary progressive MS announced abruptly and with little support ([70:32]).
  • The fear of rapid decline:
    “It felt as if I’m going to go downhill tomorrow.” ([70:56])
  • Sharon: secondary progressive MS was more stable and easier to manage as a spouse than unpredictably relapsing MS ([73:42]).
• Acceptance:
  • “The acceptance … came out the blue for me because I never thought I would ever accept it. I was still clinging on to my healthy self … and then one day, it just … went away.” ([75:36])
  • Now, MS is no longer at the front of his mind, "it's at the back ... so I can focus on other things." ([76:24])
• Instagram account ("me, you and multiple sclerosis") as a way to document, find support, and help others ([76:43]).
• Practical tips:
  • “Get to know the illness, get to know what type of MS you have … it’s just a different way of living life.” ([78:56])
  • “Plan for everything. Plan for your worst days … get your ducks in a row for everything.” ([79:17])
  • "How we work together ... she tells me what to do and I do it." [80:11]
• Emphasis that everyone’s MS is different; find what works for you ([74:43]).

Notable Quotes & Memorable Moments

• “There is a third option … let those emotions and feelings that come up when you have the diagnosis and give some space, not running away from them, but not also fighting with them.”
  — Dr. Angeliki Bogosian [09:40]

• “You have your own MS, and regardless of the label, you and it will go on a journey together that will be unique to you.”
  — Yvonne [48:40]

• “The acceptance of MS came out of the blue for me … one day it just went … and from that moment, I’ve lived my life. Like, I know I’ve got MS, but I don’t think about it. It’s at the back.”
  — Adam [75:51]

• “Plan for everything. Plan for your worst days … it may be extreme, but plan for everything. Get your ducks in a row for everything.”
  — Sharon [79:17]

• “When the doctor said, ‘I think you’ve got MS,’ I actually went, ‘Oh, yes!’ … because it’s not cancer or motor neuron disease.”
  — Adam [63:02]

Timestamps for Key Segments

• [03:01] – Dr. Angeliki Bogosian: The emotional impact of a progressive diagnosis
• [08:53] – Coping strategies and emotional processing
• [12:16] – Transitioning from relapsing to progressive MS
• [20:09] – Strategies for adapting to change, identity shifts
• [26:41] – Types of psychological therapy helpful for progressive MS
• [31:42] – Mindfulness, expressive writing, and self-management techniques
• [38:45] – Coping with future uncertainty
• [42:57] – Yvonne’s story: Diagnosis, emotional fallout, finding acceptance
• [60:46] – Adam & Sharon’s story: Delayed diagnosis, moving to secondary progressive, finding stability and acceptance

Practical Tips and Takeaways

• Give yourself space after diagnosis—there is no “right” way to feel.
• Plan ahead for symptom changes, care needs, and emotional adjustment.
• Focus on flexibility and adaptation—find ways to continue valued activities, even if you need to adjust how you participate.
• Identify and pursue your core values by finding new ways to fulfill roles you cherish.
• Seek out support: Don’t assume you must go it alone. Build a team of nurses, GPs, neurologists, and reach out to the MS community.
• Explore therapies and self-management: CBT, ACT, mindfulness, support groups, and expressive writing are all valuable tools.
• Embrace uncertainty: Accepting the unknown can open opportunities for growth and new relationships.

Resources & Ways to Get Support

• Find further information on progressive MS, treatments, and personal stories on the MS Trust website.
• Join MS Trust’s support groups on Facebook, or reach out via helpline: 0800 0322 3839.
• Check out Adam and Sharon’s Instagram account: me, you and multiple sclerosis for daily living tips and community support.

Closing Thoughts

Coming to terms with a progressive MS diagnosis is a deeply personal and nonlinear process. This episode emphasizes that everyone’s journey is unique, and that, while the path can seem overwhelming, there are practical steps, support networks, and new sources of meaning available along the way.

“Live your life; don’t let the MS become your sole focus … as time went on and I focused on other things, gradually it’s still always with me, but it’s back here now and I can choose to let it in or not.”
— Yvonne [57:23]