February 4 marks World Cancer Day. This year’s theme, “United by Unique”, highlights the importance of placing people at the centre of care and their stories at the heart of the conversation. As with other chronic conditions, cancer is more than just a medical diagnosis – it is a deeply personal experience. A person-centred approach to cancer care should fully integrate each individual’s unique needs to support them in achieving the best possible health outcomes.
To mark this important day, we explored the importance of integrated, person-centred care for those living with multiple chronic conditions. We spoke with NCDs Advocate, Cajsa Lindberg, who shared her experience of being diagnosed with diabetes, cancer and other chronic conditions. In this interview, she reflects on her journey and explains why access to person-centred care is essential for helping people living long, fulfilling lives.
Could you introduce yourself and share your story of being diagnosed with multiple chronic conditions?
My name is Cajsa Lindberg. I grew up in Sweden and was diagnosed with Type 1 diabetes (T1D) at the age of 13, in 2002. I had typical symptoms – weight loss and excessive thirst – but probably delayed the diagnosis over summer. Eventually, our neighbours, who also had a child living with diabetes, tested my blood sugar, which was very high. That same day we went to the hospital and my journey with diabetes began.
At 26, I was also diagnosed with brain cancer. Treatment included surgery, chemotherapy and radiation. As a consequence of the tumor, I developed other chronic endocrine conditions due to damage to the pituitary gland. Since diabetes is also an endocrine condition, these conditions affect each other, making management more complex.
Can you share any specific challenges or successes you have faced in navigating care for these conditions? How has it impacted your daily life and how has your experience of care evolved over time?
Like many, my teenage years with diabetes were full of ups and downs. I wanted to be independent and manage everything myself without asking for help. I struggled with this for a while but eventually learned to balance it. What truly helped was discovering the diabetes community. Initially, I did not think meeting others living with diabetes would help, but it made a huge difference. Just knowing others share the same experiences – even without discussing it – was incredibly comforting.
The past nine years since my cancer diagnosis have also been quite a journey. Even though the cancer treatment is over, its effects remain, including the other conditions it caused. While diabetes and cancer are very different conditions, I feel like I was helped by my experience of living with diabetes when I was later diagnosed with cancer. I was already familiar with the reality that not every day would be a good one. I also knew how to navigate the health system; I understood my rights; and I knew that I could ask for support.
With diabetes, we are very involved in our own care – we are experts by lived experience. Cancer, especially in my case, was acute and required quick medical intervention. I had to put my trust in doctors and nurses as I did not know anything about this new condition. Knowing how exhausting diabetes management can be, it was somewhat comforting knowing that someone else knew what was best for my cancer treatment.
In the months following my cancer diagnosis, I agreed with my diabetes nurse and endocrinologist that diabetes had to take a back seat. It was not our priority at the time, and it was impossible to keep the same control I used to have. The focus shifted to keeping my blood glucose levels relatively stable, understanding that cancer treatment could cause fluctuations. Additionally, certain medical procedures, such as MRIs and PET scans, required specific blood glucose ranges, adding another layer of complexity to managing both conditions.
Why do you believe person-centred care is important for people living with chronic conditions? Have you experienced this type of care personally?
When I was diagnosed with cancer I was living in Denmark and then I moved back to Sweden. I was between clinics for a while and did not have a set doctor, but I received good support from the team at the hospital where I was treated and, later, from the diabetes clinic where I started getting my regular care. However, since my combination of conditions is rare, there was some uncertainty and, in some cases, doctors had to consult another hospital or other endocrinologists.
At one hospital, the diabetes and endocrinology clinics were separate, even though my conditions are connected and affect each other. Having the patient coordinate and act as the link between clinics makes it more difficult to maintain a person-centred approach and can make care poorer. I do not believe this is the best way to organise care. A lot of responsibility is placed on the individual, which can impact both their mental and physical health. A more coordinated and structured system, with better communication between specialists and clinics would lead to better care.
Why do you believe empowering people living with chronic conditions is essential for effective self-management? Can you share any examples or insights into how empowerment has impacted your ability to manage your condition(s)?
Diabetes is a perfect example of why empowerment is important. Without the right tools, education and support, health outcomes can be very different. In my experience, diabetes is the condition that requires the most effort daily. Constantly ensuring that your health is okay is challenging. Feeling empowered and having access to education and support can make a huge difference.
Was anything ever missing or unsatisfactory in the way your care was delivered? Did that impact you physically, emotionally or even socially, and if so, how?
I have witnessed a lack of diabetes knowledge when I was hospitalised. When people living with diabetes are hospitalised for something other than diabetes, there is always some fear about whether the staff fully understands the condition. In my case, they took away my insulin pump and continuous glucose monitor (CGM) because they were unfamiliar with these technologies or how to use their data. Instead, they provided me with syringes for injecting insulin. This made managing my diabetes much harder.
Despite this, I have always had very engaged and dedicated healthcare professionals (HCPs). The issues were more systemic rather than personal. Regarding cancer care, I often talk about the lack of rehabilitation after treatment. I initially believed that after treatment, I would return to normal life. But for many, the end of treatment is not the end of their journey with the condition. Everything changed for me. I had to rebuild my life physically, mentally and emotionally while dealing with new chronic conditions. While I had some professional support, it was not coordinated – each specialist addressed one of the issues but there was no coordination nor a general focus on my rehabilitation.
What are the biggest barriers to providing holistic and effective care? What role do HCPs, the health system, and policymakers play?
Many HCPs are passionate and dedicated, but the system does not always support that. The concept of looking at the whole person is not clearly defined for many. The work and the routine of HCPs is focused on efficiency. Sometimes there is not enough time or space to figure things out. There are no clear guidelines for person-centred care, while there are strict requirements and expectations on efficiency and administration.
There is a strong grassroots engagement and many HCPs wanting to deliver the best possible care, but we need system-level support and leadership to make meaningful changes. Recognising people with lived experience as experts in their conditions can challenge traditional roles and hierarchies in healthcare. Integrating this concept into HCP education is fundamental.
Policymakers also play a crucial role. They can set the direction and goals for health systems, influence their structure and allocate resources to drive change.
What would you like to see change in the future to make care more supportive for people living with chronic conditions?
I would like to see people’s lived experience recognised as a form of expertise which might be different from other types of expertise but certainly valuable.
Particularly for those living with multiple conditions, care must be better coordinated. It should not depend solely on the person to manage and coordinate their care. The risk that something gets missed is too big. There needs to be more coordination, and we need more discussions about what coordinated care should look like.
What advice would you give to others who are navigating similar challenges? What would you want them to know about advocating for themselves and others?
Something I had to learn was to be kind and accepting of myself. Many people living with chronic conditions feel they need to manage everything perfectly, but this is not realistic. When I was diagnosed with cancer, I could not give diabetes the same attention as before – and that was okay. Accepting that we cannot be in control of everything all the time is part of living with diabetes and other chronic conditions.
It is also important to know that everyone has the right to receive good health care, to ask questions, to challenge decisions and to express their opinions. We need to take ourselves seriously without downplaying our own experience because we know ourselves and our body best.
I am grateful I stood up for myself when I needed to – without that, I would not have gotten the help I needed in some cases.