‘Living for today’ with a progressive condition

Over the course of Covid-19, I have gone from doing daily exercise to spending the majority of my time in a wheelchair. In March 2019, I was diagnosed with a progressive autoimmune condition called Multiple Sclerosis (MS), and week on week, month on month, I could feel myself getting weaker. My time was spent focused on the progression of my disease, rather than worrying about Covid-19. Unfortunately, there is nothing that exists to stop MS or make the condition better. All I could try to do was cope with change.

Sometimes with a chronic illness the most obvious is the visible, physical change, but arguably more important is the psychological change. New life situations – such as being laid off work, experiencing a bereavement, or in my case, being diagnosed with a new disability – bring shifts in attitude and behaviour. More often than not, people who experience injuries in the brain see a change in behaviour not because of the biological damage to their brain, but because of the new, more difficult circumstances that they live in (Caplan et al., 2016). I’d like to discuss that literature on the concept of psychological change when diagnosed with a chronic illness, interjecting along the way with my personal reflections on the support that someone in my position may have needed in such a difficult time.

Social identity after a diagnosis

Following a diagnosis, people might begin to understand the new position that they are in and try to redefine themselves (Irvine et al., 2009). When it comes to MS, 8 out of 10 people are diagnosed with relapsing remitting MS (NHS), which often presents itself in episodes. Generally, after an initial relapse, tests are carried out and a diagnosis is made. On the right medication, the condition can become stable, but any further activity of the disease presents itself as subsequent episodes. With regards to this form of MS, people understand their new situation and are able to adapt accordingly. It takes around two years for people to adjust to their new level of ability (RIMS, 2006).

However, another form of MS, which around 2 in 10 people are diagnosed with, is called progressive MS. Rather than presenting itself as episodes of a temporary loss of ability, the symptoms present themselves as a gradual decline of ability. This is the form of MS that I have. With this form, physical abilities are constantly changing, and so the idea of coming to terms with and adapting to your new ability becomes a lot more difficult. 

Having a social identity is generally seen as an important thing to have in life (Haslam et al., 2019) and being able to continually refine it is necessary to maintain mental wellbeing. Social isolation is a very common thing for someone with a new diagnosis to face because of how they feel they might now be perceived, and so some find it easier to avoid social interaction all together (RIMS, 2006). There can be a stigma involved with being a visibly disabled individual, and this can come about because of false assumptions about the disabled person or their disability (Rohwerder, 2019).

I can personally attest to those challenges in how others see you. Things changed for me over the duration of the pandemic. A lot of people had last seen me as fit as a fiddle. To put myself out there now after all this time attracts a lot of attention and I am sometimes met with patronising, ill-informed questions. That attention is one thing I now feel anxious about. This alone killed my excitement for things going back to normal after the pandemic. I’m still mustering up the courage to reintroduce myself as a new version of me.

After receiving a diagnosis, social support in the form of caregiving or a sense of belonging, particularly from family and friends, has been shown to be an important factor in navigating life (Kroenke et al., 2006). Maintaining the sense of belonging in particular groups (of which the family is the easiest) and also having the confidence to be a part of new groups which match your new identity after the life changing transition, is seen as an important step in the maintenance of wellbeing (Barker et al., 2014). Accepting that I was no longer able to be a part of a football team or easily go to a cafe to meet my friends was the first hurdle to jump, but then being open to finding alternatives proved even more difficult for me. I reached a point where I was happy in the comfort of my own home around no one but my family, and I had a lot of difficulty realising that living life in that way was not good for my mental wellbeing.

Navigating an everchanging disease

The ‘downward’ phase of MS, with the decline in physical ability, tends to happen decades after the diagnosis, in the fourth or fifth decade of life. When this occurs in later years, individuals are able to better cope and are able to have a more positive outlook on life (Irvine et al., 2009). But it can also happen as soon as the diagnosis comes. In my case, within three years of my diagnosis at 21 I became a regular user of a wheelchair. I could not easily relate to the countless interviews that had been conducted with older people with MS.

It is also more difficult to adjust to a disability when it poses so much uncertainty (Dennison et al., 2009). At the age of 21, going through university, newly exploring life on my own in another city, with so many hopes for how the years ahead would look, my aspirations suddenly became redundant and everything I was planning to do and achieve was no longer possible. A common theme in the interviews conducted by Irvine and colleagues was the idea of ‘Living for today’, but that was, and still is, difficult for me to comprehend with things still changing. Since my diagnosis, I have been a university student, and I am still currently undergoing my masters in Organisational Psychiatry and Psychology. More than half of the time since my diagnosis has been spent living in the Covid era, meaning I didn't have the opportunity to come to terms with my disability in a normal setting. Arguably, I’ve not even had the chance to find out for myself what ‘Living for today’ means, and that has now been made more difficult given my current circumstance.

In their study, Park (2005) established that religion gives individual's a framework for being able to manage stressful situations, which I have found to be a major factor of my ability to cope and navigate my ongoing changes. There is a particular reliance on God that has brought me comfort and has allowed me to go through this journey with an open and optimistic mind, and I have been able to interpret this disability as an opportunity for growth. Shroever et al. (2011) have referred to this as post traumatic growth and Russell et al. (2006) have interpreted it as an opportunity for ‘meaning-making’. Whether it is with regards to religion or not, a continual change means continual opportunity for growth and a continual opportunity to make meaning of things. Regardless of who it is from, support throughout this journey has been paramount for my wellbeing and I would expect it to be the same for others in a similar situation.

What the future holds

It is likely that my life will continue to change with this disability. For myself or anyone else trying to support me, whether as a friend or a professional, we’ve all come to realise that creating a vision for myself at this point just feels like a losing battle. Throughout this journey I have tried to rethink the goals that I had set for myself based on my new abilities, but before I can start working towards them, I experience another change which makes them less likely to achieve. But herein lies my newly emerging understanding of ‘Living for today’. I have begun to realise that it is less so a case of adjusting my life to suit the disability, and more so changing my mindset to live my life each day to the fullest with the disability being present.

A physical impairment forces you to change and adapt (Charmaz, 1995) and even changes in identity are necessary (Boeije et al., 2002), but figuring out the right psychological changes for me and my condition is a challenge in itself. With an ever-changing condition, it is not only a case of accepting that there need to be productive psychological changes, but it is constantly being able to re-evaluate myself and navigate the changes. Moving forward, this is going to be my biggest challenge. Maybe this world is designed for able bodied people but accepting my limitations and being able to live my life according to who I now am is my main focus.

And so, to end, a quick list of the things that have changed for me living with a progressive autoimmune disease...

• Figuring out who I am and where I belong after the disability
• Accepting that this is the new me
• Having to overcome a fear of being stigmatised as a disabled person
• Having to constantly re-evaluate life to suit my new abilities
• Being able to give meaning to everything

I have sought professional psychological support; however, the unpredictability of my situation has made this difficult and so most of the support I have received has been about coming up with sustainable coping mechanisms. Ultimately it was my own study of psychology, along with my exploration of religion and my experiences speaking to and working with others in similar situations, that put me in a mindset which I am now happy with. I hope this piece can give people an idea of the psychological struggles that exist in our society, and encourage the reader to think about possible creative ways in which the profession of Psychology can implement innovative practices to work with, and help individuals cope with their niche struggles from different angles. 

-        Ayad Marhoon is Masters student at King’s College London. [email protected]

Originally published online 16 October 2021

References

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National Health Service. (2018). Multiple Sclerosis. Available at https://www.nhs.uk/conditions/multiple-sclerosis/ 

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