This World MS Day, we’re talking about invisible symptoms

Care Workers, Community, Consumers May 30, 2019

Image sourced from worldmsday.org video

Today marks World MS Day and this year, the theme is visibility. Initiated by the MS International Federation, the day is an opportunity to raise awareness about MS and the needs of people living with the condition. In 2019, MS Australia and similar organisations around the world are using the opportunity to draw attention to the often invisible symptoms of MS.

According to MS Australia, the condition affects over 25,600 in Australia and more than two million worldwide, with roughly three times as many women with MS as there are men. Characterised by scars which occur with the central nervous system, MS interferes with nerve impulses within the brain, spinal cord and optic nerves. One individual’s experience of MS can be very different to the next, and it can be difficult to predict the course of the condition. Symptoms will vary, depending on where lesions have developed.

Why we need to talk about MS symptoms

Many of the symptoms of MS are not immediately apparent to others, which can be frustrating for someone living with the condition. MS Australia groups the symptoms into five major health problems – noting that someone with MS can be impacted by any combination:

  • Motor control – muscular spasms and problems with weakness, coordination and balance
  • Fatigue – including heat sensitivity
  • Other neurological symptoms – including vertigo, pins and needles, neuralgia and visual disturbances
  • Continence problems – including bladder incontinence and constipation
  • Neuropsychological symptoms – including depression, cognitive difficulties and memory loss

For some people, MS can present as a series of relapse and remission, while for others, symptoms can get steadily worse over time.

What people with MS want you to know

The Mighty, an online community for people facing health problems, asked their members with MS to share what they wish people understood about them. Unpredictability and invisibility – and the subsequent impact on everyday life and daily interactions with others – were amongst the messages that came through. Community members also spoke about the need to ensure plenty of rest, and for understanding about the impact that this can have on work and social life.

Similarly, MultipleSclerosis.net asked their community to share what they wish others knew about MS. Many talked about looking great on the outside but not feeling it on the inside, common misconceptions about the condition, including the myth that it’s a terminal illness and their desire for more awareness of the impact of their symptoms, as well as the fact that these can change daily.

Treatments and support available for MS

There are a range of drug treatments available which are used to either ease specific symptoms, or reduce the risk of relapses and disease progression. As noted by MS Australia, the treatments will depend on a number of different factors which will be different for each individual. Complementary therapies such as massage, acupuncture and meditation are also chosen by some.

Amongst the mythbusters listed by the team at MS Day is the belief that a person with MS shouldn’t exercise. In fact, regular, moderate exercise can help with many symptoms of MS.

According to the US-based National MS Society, a study published by researchers at the University of Utah in 1996 was the first to demonstrate the benefits of exercise for people with MS. While a gentle approach is suggested, the study found a range of benefits including better fitness, improved strength, impact on mood, and better bowel and bladder function. Amongst the recommended exercises, swimming and yoga, as well as ensuring incidental exercise in daily life are recommended. MS Australia has compiled a great set of resources on how much exercise is recommended, and at what intensity, as well as tips for overcoming common barriers.

Whether you’re looking for support to try a new exercise practice, someone to help around the house or to get you from A to B, you can build out your team on Mable, an easy, safe online platform for people to connect with independent support in their local community.

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