**4. Discussion**

**Toby:** *'I mean she probably thinks it's bothered me more than it actually has. The bit that bothers me is to see her suffering. I don't care that I can't go to a pub or cinema… I really don't care about that. She's very stoic, I say this to people – she wouldn't have any gas and air when she had the children. She's a right little tough nut… I mean she won't let it beat her. She'll just, you know, she'll do different‐, we'll* 

In this extract, Toby draws on an earlier biographical experience (childbirth) to emphasise and show respect for his wife's strength and determination, noting the shared process of finding alternative activities to do together that better accommodate the needs of the condition. Although this was recognised as difficult in particularly active phases of vertigo, several participants described positive examples, including going on outdoor walks, finding quiet pubs/ restaurants for lunch or dinner (sitting outside weather-permitting or eating early indoors to avoid crowds and noise), people watching by the coast and visiting nature-based/heritage attractions at quiet times of the day/year. Although this process of finding compensations be it alone or with a partner, family or friends—often took time, it was deemed particularly

**Emma:** *'With the gap that's created by perhaps not being able to do what you would normally do, try and fill it with something else that brings you happiness and pleasure… I've done loads of sewing… and I make these little bags – this is my therapy – I like to have something to show for my day… I've chosen fabrics which are nice and tactile, and in fact I've got a delivery coming today of really amazing bright* 

Finding these personal 'havens' [21] sometimes required significant (and ongoing) shifts in aspirations and outlook over time, with participants coming to value pleasures and activities they had previously taken for granted. This is indicated in the interview extract below from a

**Emily:** *'I was sort of going along, going along, going along, going along, and then somewhere along this path, I thought "Hang on, we don't do anything. I haven't got a life". I, I, I existed, but I hadn't got a life… But now we have found little places where we can go, so we have got a bit of a life now'.*

The importance of 'counting blessings' came through as particularly important in the interviews of longer-term sufferers. Participants talked about trying to focus on the 'good' things in their lives, making the most of remission phases and cherishing the support networks they have in place to co-navigate the condition. This is conveyed in the extract from Becky's interview below; Becky had lived with Ménière's since she was 17 years old. In her early thirties at the time of the interview, and having recently become a parent, she described the changes in her attitude to the

**Becky:** *'I've changed so much in how I've dealt with it. Because before I would have been like, "Oh just get on with it!" to other Ménière's people, you know, "I did". But now I completely understand how devastating an illness it can be… So I just, I'm grateful for each day of normality… I still appreciate living in the now, and living when like my balance is good, and my hearing is good, and the tinnitus isn't so bad… just very much, counting my blessings… focusing on what's good rather than what* 

Several participants used hope to maintain a sense of morale during the most challenging phases of the condition, particularly with regards to the potential for future medical and

condition since starting to experience bilateral symptoms of tinnitus and imbalance:

participant who had lived with severe symptoms for over 12 years:

*just do different things'.*

20 Up to Date on Meniere's Disease

important amongst longer-term sufferers:

*coloured velvets with velvet silk!'*

*might happen'.*

Our research demonstrates that the unpredictable and disabling symptoms of Ménière's result in sufferers experiencing prolonged periods of depression. In addition, it provides insight into how this is experienced in the context of everyday life. We strengthen and extend the evidence from a number of studies suggesting the adverse mental health impact of Ménière's [1, 2, 23], while also supporting previous evidence regarding the impact of Ménière's on fatigue, tenseness and unenthusiasm [23]. The importance of tinnitus severity and mental health outcomes was also highlighted.

Ménière's was strongly associated with lower health status satisfaction. This was unsurprising given the unpredictable nature of the condition and the known association with depression. Indeed, many of our participants lived with an ongoing sense of anxiety as symptoms caused their body to 'dys-appear', or emerge problematically into direct consciousness [24]. Moreover, this occurred in ways that were not only unpredictable but also uncontrollable. Losing control over a body that, prior to the onset of symptoms (severe or otherwise), had become disciplined and predictable through acts of routinised self-regimentation (working, exercising, eating, socialising and so forth—without the need for careful and strategic planning) further contributed to mental distress [25].

The similarity in other life domains between people with Ménière's and controls, including satisfaction with family, friends and financial status, is particularly noteworthy. It might be anticipated that because of their condition people with Ménière's would be less satisfied with all aspects of their life. However, previous work on other chronic health conditions has suggested that people do not always rate their quality of life as badly as healthy people might anticipate [26]. Further some studies have demonstrated small differences in reported life satisfaction or happiness between people with serious physical disabilities and 'normal' control subjects [27]. One explanation for this might be found in our participants' accounts of learning to find joy and happiness in activities that formed the fabric of their daily life, but had previously been taken for granted. Included here was the realisation of unwavering support and in some instances, new found closeness with the people around them. Indeed, the data suggested that individuals with Ménière's had more contact and satisfactory relationships with family and friends.

In day-to-day life, people with Ménière's can feel isolated, afraid, dependent and on some occasions embarrassed. Yet, reflecting previous literature on chronic illness [21], our research highlights the value of support networks and suggests they may enable people with Ménière's to live satisfying lives. We would, therefore, emphasise the importance of not just informing friends and family about the condition, but educating them on how they might best assist during its various manifestations. This might range from being mindful of inclusive forms of communication for those with impaired hearing, to supporting from afar during an attack. Aasbo et al.'s [28] concept of 'biographical we' is useful here in helping to understand the great effort partners of chronically ill put in to re-establish normality and continuity in everyday life; effort, that as our research signalled, can come at a cost of their own needs being overlooked. 'Ménière's is a disease that two people get' and this aspect warrants greater consideration as part of the broader patient treatment pathway.

Improvements in the frequency of depression episodes and health satisfaction were noted as disease duration increased. This may reflect the disease progression pathway, which usually involves a reduction in the number of vertigo attacks experienced by individuals as the disease progresses [29]. Our participants' improved ability to read their bodies and recognise signs of an impending attack suggests the development of *Ménière's literacy*. Borrowing from the concept of *interactive health literacy*, whereby individuals develop an improved capacity to act independently on knowledge with motivation and confidence in an empowered way [30], *Ménière's literacy supports* adaptation by individuals to their condition and/or medical interventions and lifestyle changes reducing the frequency of vertigo attacks. Given that vertigo is considered to be the most detrimental symptom in Ménière's [2], reductions in vertigo severity should, therefore, improve mental health and well-being. All of this is not to suggest that adaptation diminishes the ongoing sensory, emotional and social challenges that people with Ménière's face in their everyday life [16]. Indeed, our research showed that at a population level, disease duration did not alter the frequency of tiredness, tenseness or a lack of enthusiasm experienced by Ménière's sufferers. While some aspects of Ménière's may improve over time and an individual may adapt to some extent, overall it continues to impact negatively on everyday life.

#### **5. Conclusions**

Our research findings emerged from cross-sectional data. It cannot and does not seek to determine the causal pathway of Ménière's disease. Our interpretations of the qualitative data are shaped as much by the absence of certain voices as they are by the presence of others. To that end, it is noteworthy that our sample for Phase II consisted primarily of women (16 female patients, 3 female supportive partners), with just four participants experiencing bilateral symptoms of tinnitus, imbalance and hearing loss (i.e. symptoms in both ears).

Those limitations noted, the research provides the most comprehensive study of the mental health and well-being impacts of Ménière's to date and highlights the adverse mental health effects of Ménière's. By utilising the UK Biobank, the inclusion of key confounders and sufficient numbers to investigate the role of disease duration in Phase I has enabled us to offer a unique contribution to the field. Likewise, a combined focus on the individual everyday realities of living with Ménière's disease provides original insight into how it intersects with mental health and well-being in a number of different ways and across a variety of contexts. While offering a holistic and detailed analysis of this subject, the research also provides a working example of interdisciplinary, integrated research and the value it can bring to our attempts to understand complex health conditions like Ménière's disease in a way that respects the importance of the big picture, without ignoring the individual 'expert' voices of patient experience.
