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“The threat of symptoms arising any time can be psychologically disabling”

MSer and research student Hannah Morris discusses the impact of living under the threat of uncertainty can have, and how to overcome it

The threat of uncertainty can be paralysing. It can pose a huge challenge to us being who we want to be or achieving what we want to, whether it be in terms of our careers and outside relationships, or in the home with our family and friends. 

Any type of health condition can produce a threat in the short term, whether financially, socially or otherwise. Longer-term illness comes with a longer-term threat. If there is the hope of a cure to counter our fear, the psychological burden is lessened in the knowledge that there is an end in sight. With a chronic condition such as multiple sclerosis (MS), which I have, the threat is never-ending. The feeling may go up and down, but I find it is always a constant. 

Anxiety

The psychological effect of threat results in feelings of anxiety, which is exhibited in a physiological reaction. With short-term threat this is not a problem it serves as a protection, as these physiological changes support whichever ever approach is taken to escape or fight the threat. However, with consistent long-term exposure to threat, anyone’s health can be impacted. For people who have compromised immune systems, like those of us living with MS, this is something that we need to be more aware of as it can have detrimental effects to our MS status, potentially triggering the onset of a new symptom or relapse.

I personally am someone who feels particularly anxious about change of routine which is why I had a really hard time adjusting at the beginning of the COVID-19 crisis. I was always used to the routine of school runs and having that space to myself during the day. Then COVID-19 happened and upset my routine and my anxieties were all over the place as I tried to establish a new routine and be OK with it. I know from experience that this anxiety is not good for my MS so had to find ways to manage myself. 

Uncertainty 

I know only too well that the threat of symptoms arising any time can be psychologically disabling and may potentially be one of the underlying causes of anxiety in MS. According to a recent article in the Journal of Neurological Science, anxiety is disproportionately higher in the MS population compared to the general population, or even other chronic illness population. Despite this, there is a paucity of interventions targeting anxiety in MS. However, there are many ways in which threat and the resulting anxiety can be managed. 

How to manage threat and anxiety

Change your perception. Be realistic about the chances of your fears coming to light. Instead of ruminating over the ‘what ifs’, I make a plan in case the worst does come to pass. This will eliminate the need to ruminate further as you are now prepared.

Counter the psychological effect. As mentioned previously, if there is the hope of a cure, this neutralises the psychological experience of threat. We know that there is no cure for MS and some may say it’s unrealistic to live in hope of a cure too which could lead to further distress. 

However, there are other ways that people with MS can find hope by focusing on shorter-term goals and/or exploring alternative ways to attain goals. As an optimist, if I have a seemingly unattainable goal, you’ll find me seeking alternative ways to achieve it that are more compatible with my abilities. 

For example, I’d long since dreamt of doing a PhD but for a long while also didn’t think it possible due to MS-related obstacles that would potentially make it difficult to maintain attention whilst also remaining alert. As anyone with MS will know, this is something that is not always possible, especially if it is expected to follow a set schedule, when MS never seems to like to adhere to any schedule and instead strikes when it pleases. 

After a lot of head-scratching and searching, I finally came across the perfect opportunity to complete my PhD by distance. It has allowed a great amount of flexibility that lets me work with my symptoms rather than fighting against them. If I’m feeling fatigued, I can take a break when I need, or, my most common issue, if I’m experiencing a bit of ‘cogfog’, I can set the article aside and get back to it when my brain is ready to comply and I’m ready to take a deep breath and face it with patience. 

Counter the physiological response. The physiological response to threat can easily be reversed through the use of relaxation techniques that aim to reduce levels of arousal by reducing respiration, heart rates and blood pressure. Common techniques include breathing techniques, progressive muscle relaxation, visualisation and mindfully paying attention to one’s surroundings whether it be directly in the body, or the physical surroundings, making use of all the senses. 

I’m very fortunate to live in the countryside so this is one of my ‘go-to’ techniques when I can feel my anxieties coming on. I like to go outside and experience my senses whilst walking if possible, but often the weather doesn’t allow for that, so I’m generally quite content to take myself to a window, gaze out and just embrace my senses. I tend to experience sensory overload a lot so I find this approach is helpful for that too. I’ve tried to make this practice a part of my new routine to help keep on top of my anxieties. 

It might be that you generally favour one approach over the other or find that certain ones are more appropriate at different times. Either way, a process of trial and error will determine the most effective approach for each individual to reduce the level of threat and resultant anxiety. 

As part of my PhD research, I am hoping to support others with MS and invite you to join me in this endeavour by having your say in what would help you. 

 If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page. https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
Or you can go directly to the survey here https://forms.gle/5YTssp4pDVFciYEe9