When Mary Devereux attempts to use the restroom in the dead of night, she frequently collapses due to malfunctioning legs. Even during daylight, the constant ache and tiredness in her lower body prevent her from walking for more than a few minutes.
This 57-year-old woman reports a marked shift in her life ever since she was diagnosed with multiple sclerosis (MS) a little over a decade ago.
MS primarily inflicts damage upon the nerves within the central nervous system, encompassing the brain and spinal cord. It often leads to muscle rigidity and difficulties with mobility and articulation.
“I received my MS diagnosis at 45. I initially believed my symptoms were just the result of a tiring lifestyle,” Devereux shares. “Despite having an amazing job, it entailed frequent travel. To my surprise, it was MS all along — a truth that came as a shock. I was aware something was amiss but couldn’t determine the cause. Illnesses like the flu are manageable – you feel awful for a few days, but then things start improving. Introducing a chronic illness into your family, however, is one of the most terrifying experiences, especially when the diagnosis implies it will change your life forever.”
She admits that she chose to totally disregard her diagnosis during the initial five years, but as her symptoms progressively worsened, denial was no longer an option. She was forced to leave the job she adored and legally prevented from driving due to cognitive issues likely linked to her diagnosis.
“Losing my driving rights was a monumental moment — it felt like my identity as a mother was being stripped away. The inability to complete such everyday tasks like picking up my children from school, or the fear of not being their first point of call, was devastating,” she says.
Devereux’s comments came amid the recent release of a survey by MS Ireland, highlighting the struggles faced by those living with the illness. The survey revealed that an overwhelming majority (91%) claimed their daily lives were influenced by the diagnosis, with over a third (31%) stating it had a significant impact.
MS Ireland’s advocacy and research officer, Alison Cotter, emphasises that multiple sclerosis is a varied disease with several different types.
“Individuals suffering from multiple sclerosis (MS) frequently experience symptoms like tiredness, cognitive dysfunctions and movement impairments,” she explains. She goes on to highlight that MS does not only influence the individual diagnosed, but it also impacts their surrounding friends and family.
The recent research surveyed revealed that 52% of respondents declared they had personal care and support from friends or family members. Significantly, 35% of those receiving assistance reported they were provided with care for over 31 hours every week. “Our data suggests that caretakers carry a substantial load, as they must combine their MS-related responsibilities with their personal lives. This emphasises how essential caretakers are in maintaining a home environment for those with MS,” she adds.
Several concerns were raised by the survey concerning the access to necessary services. The data showed that for their most recent appointment with a neurologist, about 19% of participants waited over six months, while 41% had to commute over an hour each way for a consultation. When examining neurorehabilitation, a method that can enhance functionality, lessen symptoms and boost patients’ wellbeing, less than 2% were found to utilise such services. Shockingly, 60% admitted they didn’t even know about them.
Rebecca Maguire, a clinical psychology assistant professor at Maynooth University and someone living with MS, reports that the difficulties encountered by those with the condition remain remarkably “uniform”. As one of the report’s main authors, Maguire points out that discussing the psychological toll of being diagnosed with the disease isn’t as common as it should be, given that fears of the uncertain future, anxiety, and depression are all “fairly frequent” among those diagnosed.
The survey also documented some minor advancements, like the growing number of MS diagnosed individuals in employment. “This could be attributable to the shift toward remote working due to the Covid pandemic,” she suggests.
The report closes with Maguire suggesting feasible measures to enhance the quality of life for those affected by MS, including boosting the availability of services, especially in more remote, rural regions.
The study revealed that individuals residing outside of Leinster had a higher unfulfilled requirement for neurology services. In comparison, those domiciled in Leinster had a notable higher probability of receiving an MRI scan (71%) compared to inhabitants of Munster or Connacht, at 63% and 65% respectively.
A representative from HSE highlighted that equal distribution of neurological care across the entire nation is acknowledged. At present, there are 10 centres providing neurology care nationally, she mentioned, and further efforts are underway to develop a ‘hub and spoke’ methodology to ensure broader distribution of services across the state.
Devereux, a resident of Limerick, has a scheduled consultation with her neurologist every one and a half years. In spite of this, she considers herself “fortunate” due to her access to private healthcare. She also conveyed the necessity for psychological aid, to assist individuals in dealing with the significant changes their lives will undergo.
However, she affirmed that there has been considerable improvement in her personal circumstances, largely owing to her medication, which has alleviated her discomfort significantly. Adjustment to her diagnosis has also enhanced her outlook on life.
She confided, “I was not in a comfortable state. I used to rectify situations, and I wasn’t able to resolve the one I was in. Over the past two years, my fear has lessened considerably. I do yearn for my professional role, being a contributor to the family income, my autonomy and the life my spouse and I intended to lead as we aged. To be candid, I miss who I was. Presently, my mornings involve assessing my physical status before leaving my bed. But overall, I am in an improved state, albeit it took a significant amount of time.”