Losing your Health, Losing your Self

When a person is diagnosed with a serious condition, it’s not just about treating the illness, it’s also about holding onto their identity. How does illness change the way a person is perceived, and how can we manage research in a way that doesn’t make patients feel an otherness?

Kristina Ogneva

Senior Consultant at C Space Health

How to treat people at their most vulnerable with respect

One of the most powerful moments that will make a person feel ‘other’ is being diagnosed with a chronic condition. Nearly everyone who has had to go through it describes it as a turning point.

It is a case of what Erving Goffman defines as assuming a ‘spoiled identity.’ You are forced to accept an identity that often goes hand in hand with stigma, and without sufficient support and understanding, it is hard for people to cope.

Exposed to stigma

Why do people act this way toward people with HIV, when they know it has a negative impact? I am already denied opportunities because I live with this condition.

In the wake of Brexit and the US Presidential election, there’s been much discussion on the subject of identity politics, and whether the subject helps us progress, or whether it fractures us, driving divisions deeper. It has caused me personally to reflect on what I see as the bigger question: are people better off aligning themselves with an ‘identity’, and being open and vocal about it; or are they better off attempting to fit in, which often means ignoring, rejecting, or hiding their ‘otherness’?

No matter your personal feelings about the state of politics today, the fact remains: if you have an identity that marks you out from the norm, you risk stigmatisation. So in reality, people often have no other choice but to ‘own’ their identities – by forming alliances with similar people and acting based on the ways they are perceived.

However, if we don’t think about the role of external factors, like political climate and neighbourhood, on people’s willingness, or even ability, to own their identities, identity politics lose their meaning.

For instance, if you happen to live in London or San Francisco, and also happen to have been diagnosed with HIV, you may be more likely to give yourself permission to identify yourself in this way. Many long-term survivors become vocal advocates for the de-stigmatisation of HIV in their communities. They will still have had to overcome psychological challenges, but their environment is helpful to them eventually reaching acceptance. However, if you are a working class, cisgender, straight white person living in Yorkshire, societal and economic issues might mean that you have a much harder time dealing with the ‘label’ of the condition internally, let alone openly aligning yourself with the HIV community. I was born in a culture (Russian) where most people try their hardest not to stand out in any way, so I can relate.

Helping patients in identity-crisis

Being told I had HIV was confusing and isolating. I’m a straight man, so when I was diagnosed I wanted support from someone with the same story, but the support groups were aimed at gay men. Where did I fit?

Lately, the term ‘patient centricity’ has been used by organisations to show a commitment to the people they serve, a promise to be there when traditional governmental or clinical structures are unable, or unwilling, to help. This is a radical step away from a long-held belief that commercial and clinical success only comes from a focus on compliance and education.

Pharma companies are starting to recognise that supporting people whose identities have been irrevocably altered by illness, and helping them to accept that, will lead to patients sticking to their treatments.

Historically, traditional approaches to patient support programmes and communications have assumed that a person is comfortable with being identified publically as someone living with a condition. However, if modern pharma organisations are to provide effective, meaningful support and truly deliver on patient centricity, they have to achieve a delicate balance of demonstrating a nuanced knowledge of patients’ challenges, while avoiding making them feel like ‘the other’.

I believe the best way to achieve that balance is through a dialogue with people affected by chronic, and often debilitating, conditions. Through working with patients, caregivers and healthcare professionals, I have seen that this approach ensures we remain sensitive to the fact that living with the disease isn’t the only challenge patients face; they have to contend with how people see them, and with how they see themselves.

Here are a few fundamental principles we use at C Space Health in our work with individuals living with chronic conditions that can serve as helpful reminders for anyone conducting market research in the health space:

  • Try to speak their language, but don’t assume or pretend to know what it’s like.
  • Be open and honest with them about your motivations and goals.
  • Provide safe spaces where individuals can feel empowered to give or receive peer support.

We still have a long way to go, but setting the right course for engaging with patients is crucial if we are to deliver on promises and support people living with chronic conditions where it matters.

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