Beyond Diagnosis: What Pam Walker’s Positivity Teaches Us About Living with MS
- Clarise Castleman
- 15 hours ago
- 7 min read
When Pam Walker reflects on her life with multiple sclerosis (MS), her message is strikingly simple: “It’s not the end of the world… just get on with it.”
I interviewed Pam, a wonderful woman who was diagnosed with MS in her teenage years. For many, an MS diagnosis is imagined as a moment of profound emotional upheaval, defined by fear, uncertainty, and psychological distress. Clinical research often reinforces this narrative, highlighting increased rates of anxiety and depression following diagnosis (Davis et al., 2021). Yet Pam’s experience reveals a different side to this picture. Diagnosed after experiencing her first symptoms at just 16 years old in 1983, she does not define her life by her diagnosis. Instead, she describes something quieter, less visible, and perhaps less discussed: long-term adaptation without formal support.
Her experience raises an important question for both researchers and clinicians: what does “coping well” really look like? And are we overlooking unmet needs when patients appear resilient?
This blog will explore Pam’s journey of living with MS over several decades, highlighting how her positivity and practical approach have shaped her experience of the condition. It will consider how resilience can coexist with a lack of formal support, and what her story reveals about the realities of diagnosis, adaptation, and everyday life with MS. In doing so, it also reflects on how healthcare systems and research can better recognise and support the diverse ways individuals cope and live well with long-term neurological conditions.
A Diagnosis Without Answers
Pam’s early experience of MS reflects a very different healthcare landscape to the one we might expect today. After waking one morning with numbness down the left side of her body, she was taken to her GP, who initially suspected glandular fever. At the time, MRI scans were not routinely available, and diagnosis relied heavily on clinical suspicion and invasive procedures, such as lumbar punctures.
“I had various bits of numbness… tingling feet, tingling hands,” she recalls. “They thought I’d got MS, but they didn’t really say much.”
This lack of clarity extended beyond diagnosis into communication. Pam describes her early interactions with healthcare professionals as minimal and, at times, dismissive. One GP’s advice stayed with her: “There’s nothing we can do… you’ve got to get on with it.”
There was no structured pathway, no psychological support, and little guidance on what to expect. Instead, Pam moved forward with her life, finishing school, starting work, moving house, while experiencing periodic relapses that gradually altered her physical abilities.
For further context on how MS is understood in women and the role of medicine in shaping that understanding, see our blog here.
Living with Uncertainty
A defining feature of MS is its unpredictability. For Pam, relapses occurred every few months, each time leaving a slightly greater impact.
“Each time you get a relapse, you don’t go back quite as well as you were before,” she explains.
Despite this, she does not describe her experience in explicitly emotional terms. When asked about her mental health following diagnosis, her response is telling: “I don’t really remember… mental health wasn’t really talked about back then.”
This absence is striking. It does not necessarily indicate the absence of emotional impact, but rather the absence of language, support, and space to process it. Pam remembers crying when she first learned of the diagnosis, “I was only 16”, but beyond that, emotional responses were neither explored nor revisited within her care. Instead, uncertainty became something to live alongside rather than resolve.
For further insight into how others experience living with MS, see our interview with Janet Stapleton here.
Pragmatism as a Coping Strategy
If Pam’s story is not defined by overt psychological struggle, it is defined by pragmatism.
Her approach remained consistent throughout the interview:
“If I can’t do something, I can’t do it.”
“Take every day as it comes.”
“Don’t sit at home and ponder.”
This mindset is not framed as a conscious coping strategy, but as a natural disposition, something she has “always” had. Yet it aligns closely with behavioural approaches often encouraged in chronic illness management: maintaining activity, focusing on what is controllable, and avoiding withdrawal (Von Korff et al., 1997).
Her philosophy is perhaps best captured in a phrase she repeats more than once: “Use it, don’t lose it.”
This is reflected in her daily life. Despite now using a walker and an electric wheelchair, Pam continues to travel, go on holiday twice a year, attend exercise classes, and remain socially active. She has adapted her environment to fit her needs, moving to a bungalow and using mobility aids, but does not withdraw from it.
At the same time, her account hints at quieter losses. She no longer joins friends on long walks. She has stopped driving. She lost her job and suspects her MS may have influenced hiring decisions afterward. These experiences were acknowledged but were not dwelt upon.
“I’ve just got used to it,” she says.
The Absence of Mental Health Support - Then and Now
While Pam’s diagnosis occurred decades ago, some aspects of her care remain unchanged. She describes annual neurology appointments that last only a few minutes, focused primarily on physical symptoms.
“Mental health’s never mentioned,” she says plainly.
This is particularly significant when considered alongside emerging research. Many newly diagnosed MS patients report heightened levels of anxiety and depression, especially in the early stages following diagnosis (Janssens et al., 2003). Despite this, access to psychological support remains inconsistent, and patients often need to actively seek out services themselves.
Pam’s experience highlights a potential gap: patients who do not explicitly express distress may not be offered support at all. Her case raises an important question: if someone appears to be coping, does the system assume they do not need help?
Community, Connection, and Informal Support
Although formal support was lacking, informal networks played a key role in Pam’s adjustment.
A turning point came when she discovered a local MS centre, not through her GP, but through a colleague. There, she accessed physiotherapy and, perhaps more importantly, met others living with MS.
“It was nice to know there’s other people out there,” she says.
This sense of shared experience appears to have been valuable, even if she does not frame it in explicitly emotional terms. More recently, she has found similar benefits in a local exercise class, where some participants also have MS.
Her personal relationships have been central. She speaks warmly of her husband, describing him as essential to her independence and quality of life. Friends, too, provide ongoing support and companionship.
These networks seem to fill, at least in part, the gaps left by formal services.
Rethinking Resilience
Pam’s story challenges a common assumption in healthcare: that resilience is straightforwardly positive.
On one hand, her outlook is undeniably adaptive. She remains active, engaged, and forward-looking. She does not define herself by her condition. Her advice to others is empowering:
“Don’t give up. Keep going. It’s not the end of the world.”
On the other hand, her resilience may also mask unmet needs. She has received minimal guidance, limited access to services, and no structured psychological support. She has had to navigate employment challenges, benefits systems, and lifestyle adjustments largely independently.
Her experience suggests that resilience is not simply an individual trait, but something shaped, and sometimes strained, by the systems surrounding a person.
What Can We Learn?
Pam Walker’s story does not fit neatly into dominant narratives of chronic illness or mental health. She is neither a story of crisis nor of complete support. Instead, she represents a third space: long-term adaptation in the context of limited resources.
For researchers and clinicians, her experience offers several important insights:
Mental health support should not be contingent on visible distress. Patients who “get on with it” may still benefit from emotional support, even if they do not actively seek it.
Signposting is crucial. Access to MS centres, peer groups, and financial support should not depend on chance encounters.
Short consultations limit holistic care. Ten-minute appointments focused solely on physical symptoms leave little room for broader wellbeing.
Resilience should not replace support. Encouraging independence is important, but it should not come at the expense of accessible care.
“It’s not as bad as you might think”
If Pam could speak to her 16-year-old self at the point of diagnosis, her message would be simple:
“It’s not as bad as you might think.”
This is not a dismissal of the challenges of MS, but a reframing. Her life has changed, certainly, but it has not stopped. She continues to travel, socialise, and find enjoyment in everyday activities.
At the same time, her story is a reminder that no one should have to navigate such a diagnosis alone, or with so little guidance. People like Pam show us what is possible. It is now up to healthcare systems and research communities to ensure that resilience is supported, not assumed.
Support Available:
Below I have attached some useful links for MS support in the community:
Rachel Horne Prize:
Applications are currently open for the Rachel Horne Prize for Women’s Research in MS. If you or someone you know would be interested in submitting an application to receive the award please click here for more information.
References:
Davis, B. E., Lakin, L., Binns, C. C., Currie, K. M., & Rensel, M. R. (2021). Patient and provider insights into the impact of multiple sclerosis on mental health: A narrative review. Neurology and Therapy, 10(1), 99–119. https://doi.org/10.1007/s40120-021-00240-9
Janssens, A. C. J. W., Van Doorn, P. A., De Boer, J. B., Van der Meché, F. G. A., Passchier, J., & Hintzen, R. Q. (2003). Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurologica Scandinavica, 108(6), 389–395. https://doi.org/10.1034/j.1600-0404.2003.00166.x
Von Korff, M., Gruman, J., Schaefer, J., Curry, S. J., & Wagner, E. H. (1997). Collaborative management of chronic illness. Annals of Internal Medicine, 127(12), 1097–1102. https://doi.org/10.7326/0003-4819-127-12-199712150-00008
This article was written by Clarise Castleman and edited by Rebecca Pope, with graphics produced by Suzana Sultan. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.