|19th February 2015
The healthcare industry would probably categorise me as a ‘residential carer’ because I am carer to my boyfriend Johan, who has type-1 diabetes. When you live with a person who has a chronic illness you often find yourself in situations that are emotional and difficult to approach; creating that 'elephant in the room' scenario. I want to share my personal story about my role as carer, and why I believe that empowered carers can contribute greatly to patients’ quality of life. Despite the vast amount of information available about diabetes, it has been difficult to find any practical advice on how, as carer, I might start to deal with Johan's grief throughout his emotional journey from diagnosis to now.
Johan was diagnosed with type-1 diabetes in January 2013, we met shortly thereafter. I have experienced first-hand how he has adapted to life with a chronic illness. As most couples do, we moved in together; until then I had never lived with a person who had a chronic disease, in fact I'd never even known anyone with diabetes. In the beginning Johan’s illness was a sensitive topic and he became visibly emotional talking about it. Whenever I broached the subject he would become angry and frustrated that I was reminding him about the disease. This was difficult for me and I often ended up asking myself: “Why did I just ruin what could have been a really nice evening? Yet again…” However, I couldn’t help wanting to talk about it, searching for information, asking questions and observing him carefully.
As a result of this he began to distance himself from me, so why did I not just let it go and allow him deal with it alone? Because I was scared - scared of finding myself in a situation where he would become hypoglycaemic and I would have no idea what to do. Hypoglycaemia (hypo) is when the blood glucose level gets too low; symptoms such as sweating, dizziness, and confusion are the most common, however in severe cases symptoms can include: unconsciousness, convulsions, and even coma. It was terrifying to know that this could happen to Johan, and I did not feel at all prepared to deal with it. So, I kept asking him what it was that he needed me to do – I was relying on him to tell what to look out for, or when he felt his glucose-level was dropping. It felt as though I was part of his diabetes, but at the same time distant from it, and without any control over what happened. My big pain point was (and still is) the anxiety over the risk of hypo incidents.
Much of the information I have read about diabetes has not provided adequate guidance on how carers should deal with the condition, especially in the different situations that are likely to occur. On one website the information explained how, as carers, we should be more considerate about diet and exercise, which was useful. However I could not find any guidance on how to approach talking about the diabetes itself - how to deal with this elephant in the room. The roles of stakeholders (physicians, pharmacists and nurses) are widely acknowledged and addressed as part of the patient journey; however in my experience the information about what is required by the carer has not been adequately addressed.
Thankfully Johan’s adherence is pretty good and he manages his diabetes well. As time has passed it’s become easier to have those important conversations without either of us getting too upset. At the risk of sounding conceited, I know that I have played a major role in the process of him accepting his diabetes, instead of constantly denying and fighting it. Getting us to this point required a lot of effort addressing the topics we were uncomfortable discussing, and it took time for the both of us to adapt our needs in order to reach a final compromise about how to articulate ourselves.
Upon reflection, I feel that my role as carer was, to some extent, overlooked when thinking about the journey Johan and I have been on together. If I had been better equipped to support him then the journey may have been less ‘bumpy’.
Dare I say it, but I believe many other carers feel this way – they want to know how they can best help their loved ones. However, in the moment, it can be really difficult to remember the boundaries of what is within your remit and when you are going too far. The benefit most carers have is that they spend most days with a patient, so why not use this opportunity as an additional touch point in the patient journey? How can we empower carers to support the patient even further? I'm not trying to remove attention from the patient – I just think that the disease is a shared challenge for both the patient and the carer.
|27th August 2020
Precision and personalised medicines are more than products, they are services in their own right. So, how should pharma approach this uncharted territory to ensure targeted therapies work for patients?