According to the authors of a study carried out at the University of Wollongong in Australia, there has been very little research exploring experiences of young people with “CFS/ME” as they transition to adulthood.
This period of life is important as it is often a time when individuals develop their independence and explore their identity. However, due to the debilitating symptoms of ME/CFS, for many young people with the disease, this transition may look very different.
Knowing more about how young people with ME/CFS experience this transition – and identifying the problems they face, may help health professionals to provide more relevant support during this period of life.
Therefore, the research team aimed to explore experiences of transitioning into adulthood from the perspective of young people aged 16 to 25 years, with “CFS/ME”.
What did the researchers do?
Thirteen young people “diagnosed with CFS/ME” were recruited to the study and took part in interviews with the research team – interviews were conducted online or by telephone. Regrettably the criteria used to diagnose “CFS/ME” were unknown.
What do the results show?
The researchers identified three key themes across the interviews, these were:
1. “Independence: a different path or inaccessible adulthood?”.
This theme included that those with ME/CFS may have different milestones and trajectories than their peers without the disease. Some participants described how milestones such as finishing school at 18, obtaining a driver’s licence, dating or moving out of the family home felt either unachievable or delayed. It was also noted that achieving independence through typical means may be inaccessible for those with “CFS/ME”.
Interviews with the young people with ME/CFS revealed that there was tension between learning to manage physical health and emotional needs while establishing and honouring boundaries – notably, one participant explained that psychological therapy had helped her to manage these tensions, and to “speak up” and ask for what she needs.
Participants also commented on how depending on others made the process of forming a stable personality and sense of self as an adult complex. One participant noted that she “felt guilty” that she was still reliant on her mum at 21 years old – a period in which when she had expected to require less assistance from her parents. Other participants reported feeling like a “burden”.
2. “Identity: who could I have been?”.
Here, the authors noted that many of the participants “wondered who they might have become in the absence of their CFS/ME”. Participants reflected on how the disease had restricted opportunities to explore their identity, and that this may have hindered their understanding of their sense of self. Identity exploration was also restricted due to limitations imposed by society; one participant described how many potential employers “don’t want people that have illnesses and stuff because they can’t work full time”.
Some participants also noted feeling older than their peers due to the experience of having to manage a health condition. The researchers observed that this created a sense of “unease” as although the participants with “CFS/ME” experienced emotional maturity, they did not experience more socially recognisable signs of maturity of independence – such as living independently.
Another key area within this theme related to how many participants lacked confidence because of the “constant cost-benefit evaluation process needed to manage daily life”. One participant explained that this led to increased levels of anxiety and decreased self-confidence – another participant noted how the continual analytical process contributed to a “mental load”.
Many participants experienced disbelief from doctors, teachers, and family members – the damage from such interactions was significant. For example, participants described that their self-trust had been eroded, and that this self-doubt had serious implications for mental wellbeing and sense of self. Unsurprisingly, these harmful interactions “haunted” some participants, and created barriers to engaging in healthcare.
Participants also reported that in relation to their “CFS/ME” they had experienced a lack of understanding, misconceptions, and stereotypes, all of which contributed to participants feeling different from others.
3. “Isolation and disconnection: being with people but not being like them”.
Participants described feeling separate and different from those around them which this led to feelings of isolation and loneliness – regrettably, existing research has found that social isolation is often an unavoidable consequence of living with ME/CFS. Difficulty maintaining friendships, particularly due to absenteeism from workplace and education spaces, was also reported.
Interestingly, those participants who had been able to obtain a driving license reported that the ability to transport oneself had a significant positive impact on relationships, and made “work and attending to basic needs more feasible”.
In a section that the authors entitled “Comfort and clarity-an important aside”, participants also shared some positive aspects of their lives by exploring things in their lives that brought them comfort. These included:
- Leaning on family and friends.
- Retaining connection with the present moment, rather than the past or future.
- Learning to trust oneself.
- Pets.
For some of the young adults in the study, chronic illness had clarified their values and perspective of what is important to them.
Limitations of the study
Several limitations were noted by the researchers:
- All participants were recruited through one “CFS/ME” service – this may mean that there are similarities between their experiences which may not apply to those attending other services for the disease.
- Most of the participants were female – the results of this study may not reflect the experiences of young men with “CFS/ME”.
- For example, men with “CFS” have been found to face challenges relating to masculinity and the pressure they feel “battle through” symptoms.
- “CFS/ME” diagnosis was not checked using validated ME/CFS criteria – Participants were also not asked whether they experienced post exertional malaise, said to be the cardinal feature of ME/CFS.
- Many participants had at least one other health condition in addition to their “CFS/ME” which may have impacted their experience of transitioning to adulthood.
- Duration of illness was not explicitly explored – those who were recently diagnosed with “CFS/ME” may have had a very different experience to those who had the disease for a longer time.
ME Research UK adds that although the number of people who took part in this study was very small at 13, this number is appropriate for the qualitative study design used. Unlike research which collects and analyses numerical data (quantitative research), research which explores concepts, opinions, or experiences (qualitative research) requires fewer participants, and does not rely on the number of people in the study (or the number of study samples) to be able to detect significant results, or for more complex statistical tests. Despite this, the experience of the 13 participants in this study can not be extrapolated to all young adults with “CFS/ME”.
Summary
“Participants in this study described having CFS/ME as profoundly impacting their experience of adulthood and relationships, and the consolidation and formation of their identity”
Key findings from the study included that:
- The journey to independence is atypical for young people with “CFS/ME”.
- Identity of participants was complicated by their chronic illness – something the authors note is consistent with existing research findings.
- Participants expressed a lack of confidence both in themselves, and in medical professionals – people not understanding was identified as “the biggest struggle” with having the disease.
- Participants described feeling innately different from those around them – including those they were closest with, leading to feelings of isolation.
- Participants recognised two means of addressing isolation: technology and personal transport.
The authors suggest several ways in which clinicians can support young people with “CFS/ME”, including:
- To recommend activity pacing, but to be aware that there may be unintended consequences of this approach – the constant evaluation and self-reflection may lead to self-doubt and a sense of incompetence. As such, clinicians should explain to young people with “CFS/ME” that “perfect management is not possible”.
- Mental health professionals may play an important role in assisting young people with “CFS/ME” to explore their identity, and to address uncertainly about who they are, and grief about their past, present and future.
- To facilitate understanding and communication between the people involved in supporting the young person with “CFS/ME” – most commonly, their family.
