I felt such relief at having a person of authority acknowledging the experience undiagnosed patients, so I think there may be value in sharing my discovery.
The research paper was based on 18 interviews with neurology outpatients who varied in terms of their age, gender, and the severity and duration of their undiagnosed illness. Dr Nettleton’s research identified seven themes that characterise the experience of people living without a diagnosis.
1. Uncertainty
- “No diagnosis, no prognosis” said one of Sarah’s interviewees. Patients have no idea of how their symptoms might progress: temporary or permanent? can they be treated? will they get worse?
- People with unexplained illness can have no idea how their symptoms should be managed.
- Planning day-to-day is virtually impossible (symptoms are unpredictable, and can vary hour-to-hour, day-to-day, month-to-month). Planning holidays, housing, and financial issues are especially difficult.
2. Lack of Support
- “Uncertainty is compounded by lack of information and ongoing support” (Source: Nettleton)
- Patients with unexplained illness have no access to leaflets, support groups, treatments, or advice, resulting in feelings of isolation, desperation, and feeling there is no where to turn to for help.
- Securing on-going support is usually more important to this patient group than a disease label.
3. Social/Family Relationships
- Asking for help can become difficult for anyone who feels like they are a burden already.
- The ‘centrality of the body’ in social interaction and the lack of clarity and prognosis for unexplained symptoms makes sustaining relationships, at the very least, a challenge.
4. Relationships with doctors
To address this theme in my own words:
- Doctors become the primary source of information, because without a diagnosis there is no way of accessing leaflets and other secondary sources.
- The attitude and manner of doctors is important because the doctors need to be able to reassure the patients that their symptoms are legitimate and genuine. This acknowledgement is of utmost importance to a person with unexplained symptoms.
5. Lack of credibility and legitimacy
- “Not having a legitimate diagnosis also limits legitimate access to the ‘sick role’ with all the associated rights and privileges.” (Source: Nettleton)
- “Social norms dictate that we should make efforts to get well… within this context, it is not surprising that advice from “well-meaning” friends and relatives could be a source of frustration.” People with “unexplained” illness know that if they are “not seen by others to be working at getting better, there is a risk that other people will think they are malingering.” (Source: Nettleton)
- The use of sophisticated technology and tests to locate disease in the body creates the belief that the ‘experience of illness’ is less legitimate than disease or damage that you can locate in the body with imaging technology, etc.
6. Influence on the ‘self’ and social identity
- “Although on one level the patients recognised the authenticity of their symptoms, they also found that the lack of clinical information made them question themselves”. (Source: Nettleton)
- “All the participants reported how, at some point, they had asked themselves questions such as: ‘Am I imagining it?’ ‘Am I just being lazy?’ ‘Is it something I have manifested?’" (Source: Nettleton)
7. Searching for explanations
To put it in my own words:
- Although some people can accept that they won’t get a diagnosis, it's still important to them that they can ‘make sense of’ their symptoms in some way. They need to be able to explain their symptoms to themselves, but also to friends, family, and official bodies: without an explanation some people find it difficult to access support/understanding, and others find it virtually impossible.
Patients who have not been diagnosed and continue to experience symptoms that effect their sense of wellbeing and quality of life for years, even decades, are often told that they are experiencing "Medically Unexplained Symptoms" or "Medically Unexplained Physical Symptoms". This is an umbrella term that covers a variety of conditions. Because it is vague and makes a point of saying very little, it provides little reassurance to the undiagnosed patients, and can exacerbate their fear that doctors regard their symptoms to be 'in the mind' rather than firmly rooted in medical legitimacy.
Despite it's failings, and my reservations about its usage, the term "Medically Unexplained Symptoms" it does allow us to group these patients together, regardless of their symptom-type, and start a discussion about the impact of having an undiagnosed 'unexplained' illness, in a society that still believes, in the most part, that western medicine has all the answers.
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