The psychological impact of a lifelong illness

Louise Foster has a conversation with her mother about Multiple Sclerosis.

Multiple Sclerosis (MS) is a lifelong condition which involves damage to the nerve cells in the brain and spinal cord. The immune system mistakes the myelin (a substance which protects the nerve fibres) for an infection and begins to break it down, either slightly or completely. This leads to a variety of physical symptoms such as eye problems, fatigue and limb pain and can vary from person to person. Although a range of physical symptoms can lead to a diagnosis, emotional effects often go undiagnosed…

Multiple Sclerosis is a relatively newly discovered neurological disease, first described in 1868 by Jean-Martin Charcot. By 1870, people were being diagnosed with MS in the United States and for the following 50 years, doctors treated it as a rare condition (Talley, 2005). One of the first cases in Britain was reported in 1873 by William Moxon. By 1950, it was viewed as one of the most common neurological disorders in the US, possibly due to the increasing number of physicians and higher awareness of MS and its physical symptoms (Talley, 2005). Over 130,000 people in the UK have a diagnosis of MS, and women are three times more likely to be affected than men (Harbo et al., 2013).

According to the MS Society, the changes in emotion and behaviour in MS patients are not fully understood but a variety of factors such as individual personality differences and nerve damage to brain cells can be contributors. Emotional effects can also be caused by the sudden change to a person’s life and the realisation that their life is going to change.

In one study, neuroticism, depression, anxiety and stress were more prevalent in MS patients than in non-MS sufferers (Zeynab, 2012). In an earlier study of 75 patients and the clinical records of 200 more, 12 per cent showed unusual irritability, 18 per cent showed lability of mood, 10 per cent were euphoric, 20 per cent were depressed, and the remaining 40 per cent reacted with low moods concerning the future of their MS (Braceland & Giffin, 1950).

‘I used to cry for days on end’
I sat down to have a conversation with my mother, Joy, who was diagnosed with Secondary Progressive MS in 1997 at the age of 44. We chatted about her psychological wellbeing during her illness and if she had noticed any changes in her mood or memory. I asked her what her initial reaction was to being diagnosed and what her emotional state was.

Joy: I wasn’t overly shocked because I’d known I’d had it since I was 13, but they were unsure of what it was. I was off school for nine months and completely lost all feeling in my right-hand side. I cried when I was diagnosed because it was still a shock. When the doctor asked why I was crying I told him because hearing it out loud made it real. I had been told by a lot of doctors I didn’t have it. It was upsetting to have it confirmed. The doctor told me I could have a long life with it and that nothing was certain. He even said I could live another 30 years with this, and he could get hit by a bus tomorrow! No one knows what will happen.

The first thing that went through my mind was ‘is it hereditary?’ because I worried about you and your brothers developing it. The doctor told me the only way it could be hereditary is if it is passed from father to daughter. I know my father had it, and they think it was caused by him going to the beach all the time when he was younger. This was in the 1930s, so they didn’t know much about it then, but they thought you could pick up viruses on beaches which could cause damage to the nerves.

Louise: I recall having to stay at my nana’s house while you went for tests. I didn’t really know what was happening. All of a sudden everything had changed. Dad had come back from abroad and you were struggling to get around the house.

Joy: I know, it was hard to explain to you what was going on. I just wanted to keep things as normal as possible for you. I can remember when you were about 11 and you asked me when I was going to get better. I didn’t want to lie to you, so I told you the truth, that I wasn’t going to.

Louise: I can still remember that conversation and the full reality of what was going on hit me at that point. I remember you hesitating before you told me, but I’m glad you did. What emotions did you feel having to tell me that?

Joy: I felt sad. You were only young, and I didn’t want to have to put that on you. But I didn’t want to lie to you and for you to find out another way. How did you feel when I told you?

Louise: I remember sitting quietly for a few seconds, letting it sink in. There was a little bit of fear, but I was also relieved you had been honest. I didn’t know anything about MS so it was like uncertainty of the future and how things could change.
Do you feel your psychological state has changed throughout the MS? Has it stayed the same throughout or have there been very down periods?

Joy: It has been up and down because your dad was working abroad, and I didn’t have anyone to talk to. You were only 10 and I didn’t want to talk to your brothers because I didn’t want to upset them. They were 24 and 28 at the time but I knew they had their own lives to be getting on with. I used to cry for days on end. Everything goes through your mind about what could happen in the future. The last 20 years I’ve had to rely on a wheelchair.

My worst fear is going blind, and I feel like I’m going downhill. I don’t like to go out for meals because of the fear of choking. One of the worst things is when people stare which makes me feel uncomfortable. When children stare, I feel angry at the parents for not teaching them to be a bit more understanding. I remember one time, it was my first Christmas in a wheelchair, and we were shopping. The shop was busy, and I was trying to push myself around. I overheard a woman say to her friend, ‘you’d think they’d stay at home, wouldn’t you?’ obviously referring to me. That made me feel awful and depressed.

Louise: I have witnessed everything you’re telling me, and one thing that stands out is other people’s attitudes – the staring annoys me too. There have been times when people treat you like you’re invisible. I know we’ve both said things to people because of their ignorance. It isn’t even about being unaware, they just seem to think it doesn’t matter. Do you think your attitude has changed since you’ve had to use the wheelchair?

Joy: Definitely. When I was younger, I wouldn’t say anything to anyone, I would just keep quiet to keep the peace. Being in a wheelchair has made me feel like I need to say something if it needs to be said. I don’t like confrontation, but I’m not afraid to stand up for myself anymore.

Louise: You tell me so many stories of when you were younger and about the family and your friends, but do you think your short-term memory has been affected?

Joy: I can hardly remember what happened last week! But to be honest, I don’t get out much, do I, so there probably isn’t anything to remember. I have to rely on your dad to write down important dates otherwise I’ll completely forget about them.

Cognitive changes
A key psychological factor of MS is memory loss, which is part of a group known as ‘cognitive symptoms’ – 65 per cent of MS patients experience cognitive impairment (Rahn et al., 2012). According to the MS Trust, ‘the symptoms are relatively mild, and can fluctuate from day to day, or from morning to evening’. Research shows that most patients have difficulty remembering past lessons and experiences.

Another cognitive symptom of MS is compromised attention, which may also be affected by memory loss, as it may be difficult for the patient to remember the information needed to complete a task. Other symptoms include problems with verbal fluency, planning and prioritising. However, other cognitive functions such as reading comprehension and long-term memory are not likely to change (Macias Islas, 2019).

Early recognition of cognitive symptoms is important as they can lead to a decline in quality of life. The first signs can be subtle and are usually noticed by the patient or a close family member. Treatments are available, but symptoms are not routinely evaluated or treated. It is an area that needs urgent attention. One treatment is ‘Cognitive Rehabilitation’, which involves restorative activities including memory and learning exercises. These exercises include ‘repeat and verify’, building associations using memory aids, and combined modes of learning such as ‘see it, say it, hear it, write it, do it’ (Kalb et al., 2018).

Improving quality of life
There are very few studies on cognitive changes because MS is so rare, but the National MS Society are funding some investigations of cognitive changes and their history, as well as looking into more successful ways of diagnosing and treating cognitive issues. It is hoped that in the future MS patients will have better access to therapies, treatments and rehabilitation that will modify the impact of the cognitive changes and lead to a better quality of life. As I have seen from personal experience, MS can be an emotionally distressing illness, affecting not only the patient, but their close family too. Patients and their families need support and guidance to help them understand and navigate this disease and the changes experienced.

My personal experiences of MS and its impact have led me to focus on Neuropsychology for my future career. I intend to investigate the psychological effects of MS in a PhD. A cure is a long way off, but helping people mentally cope with this disease can improve quality of life and leads to a more positive outlook. My research will look at how drug trials for MS affect the mental health of participants – I want to see the psychological impact of the possibility of a new drug. Do patients feel confident, apprehensive, excited or something else? Do these emotions change the patient’s attitude towards MS? And how do patients feel once the trial is over? What if they feel the drug has worked but they are no longer able to take it until it has been medically approved? I hope this research will shed light on the psychological impact of drug treatments and how the promise of new medication changes the patient’s attitude towards the MS.

- Louise Foster is an MSc student at Arden University
[email protected]

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Key sources

Braceland, F.J. & Giffin, M.E. (1950). The mental changes associated with multiple sclerosis. Research publications - Association for Research in Nervous and Mental Disease, 2, 450–455.

Ghasemi, N., Razavi, S. & Nikzad, E. (2017). Multiple Sclerosis: Pathogenesis, symptoms, diagnoses and cell-based therapy. Cell Journal19(1), 1–10.

Harbo, H.F., Gold, R. & Tintoré, M. (2013). Sex and gender issues in multiple sclerosis. Therapeutic advances in neurological disorders6(4), 237–248.

Kalb, R., Beier, M., Benedict, R.H. et al. (2018). Recommendations for cognitive screening and management in multiple sclerosis care. Multiple sclerosis (Houndmills, Basingstoke, England)24(13), 1665–1680.

Macías Islas, M.Á. & Ciampi, E. (2019). Assessment and Impact of Cognitive Impairment in Multiple Sclerosis. Biomedicines7(1), 22.

Rahn, K., Slusher, B. & Kaplin, A. (2012). Cognitive impairment in multiple sclerosis: a forgotten disability remembered. Cerebrum: The Dana forum on brain science2012, 14.

Talley, C. (2005). The emergence of Multiple Sclerosis, 1870-1950. Perspectives in Biology and Medicine, 48, 383–95.

Zeynab, K. (2012). Effective psychological factors on Multiple Sclerosis. Medical Journal of Tabriz University of Medical Sciences34(4), 60–67. 

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