“Here you can talk to someone who isn’t too busy to listen”
On the Reuma Direkt helpline, you can talk about your whole life with a rheumatic disease. People who have a diagnosis, suspect they have a rheumatic condition, or who are related to someone with such a condition, have the opportunity to ask questions and receive support. The question line is coordinated by Maria Nylander, from the Swedish Rheumatism Association.
Who are you?
My name is Maria Nylander and I work at Reumatikerförbundet, the Swedish Rheumatism Association. At the moment I work as a coordinator for the Reuma Direkt question line, but I am also a research partner and look after, among other things, our RA instructors. I lecture a lot and am involved with the Association of Rheumatology Nurses in Sweden (FRS), and Lifestyle Work in Rheumatology, LiR, where I represent both the Rheumatism Association and the Rheumatology Nurses in FRS.
What is your background?
My background is as a nurse and care teacher but I also have personal experience of living with rheumatic disease. I have had RA for almost 30 years, since I was 26 years old, along with a secondary seasickness syndrome. It has been an advantage in my profession to have both the patient perspective and the care perspective. It makes it easier to create the optimal collaboration.
I am familiar with rheumatological healthcare, in terms of how to make a diagnosis, the treatments which are available and what is going on in general, because new things come along all the time. We focus a lot on living habits and creating a holistic view. People sometimes feel their care lacks this holistic element. So we help people feel that they have done something good for their illness. It’s a positive life experience.
What is Reuma Direkt?
Reuma Direkt is Reumatikerförbundet’s helpline. Anyone can call us if they have a rheumatic diagnosis or think they have a rheumatic condition. You can also be a close relative, healthcare professional, counselor, or a student with questions.
The answers we offer are general. We do not keep records, but we can refer people to care when needed. I feel that many of the people who contact us need support, someone they can talk to and who listens. The help we give may, for example, be about the fact people think it is difficult to reach the care chain. Then we help them try to get it right and provide the information and support that can help that person move forward. Many of the conversations are about feeling lonely in your illness, which creates anxiety and fear. It can be tough and many people do not feel completely seen. Short care visits can leave people with a feeling that the healthcare system does not have the time it needs to see the whole picture.
In terms of the pandemic, we faced a lot of pressure in the beginning, in March and April, when many people were worried about whether they belonged to a risk group, for example. Their questions could be about drugs, vaccination and general concerns. Today, now some time has passed, it is much more about how the pandemic may have affected everyday life in different ways, mainly loneliness and isolation. Maybe people are finding it difficult to meet friends, you sit at home a lot and it may also be difficult to get to the care that is heavily burdened.
What is the purpose of Reuma Direkt?
Reuma Direkt is here to be a question line where you can talk to someone who is not in such a hurry. A question often leads to more questions, and with us, you should have time to ask all the questions that arise. This can be all the questions a newly diagnosed person might have, or questions about the sick leave process, lifestyle, treatment and pregnancy. We’ll find the answers together. The people who work on the helpline come from different backgrounds including researchers, biomedical analysts, or clinical nurses.
For us, the holistic perspective is important. We like to see the whole person, both the physical and the mental, and understand how everything sits together. Suffering from a long-term illness can be like grief; it is important to talk about it.
Many people may have questions based on how they have been treated in the healthcare system. They may not feel that they have been listened to. You manage a lot of your care these days, which is good, but both support and follow-up is necessary for a person to feel safe with self-care and to know how to handle different situations.
Getting to know the community is also important. Many people feel stronger when they have met others who have similar experiences.
We have done a scientific study on Reuma Direkt, which was published two years ago, where we interviewed 27 people in depth who had contacted us. Many felt our service was a good complement to healthcare, that it was easy to get there and that they were listened to. Someone said that they often felt like there were "barrier guards" in health care, but at Reuma Direkt, they get to talk and feel understood and listened to. Sometimes people need to ask questions before or after a doctor's visit as a little extra support. Of course, we can’t answer everything, but we always can come back with answers after we have consulted a rheumatologist or another professional if necessary.
What would you say to someone who has just been diagnosed?
I start by just listening. Then it is important to explain the progress we have made in rheumatology recently and offer hope. Most people diagnosed with rheumatic conditions will get the possibility of really good treatment today. And if one drug does not help, there are others. There has been almost a revolution in rheumatology and we now know much more about the disease and have many more treatment options.
The next step is that I would recommend the person contacts their clinic again and asks to meet the whole team. Some clinics have something called an RA school. I have also suggested people join, for example, join Reumatikerförbundet and their local rheumatism association or young rheumatologists so they can get in touch with other people living with rheumatic diseases. This allows them to become one among others again, and there is a lot of power and knowledge to be gained. Then I would recommend the Elsa app and other good places you can get good support and information.
Sometimes, if need be, I can get a little personal and tell you that it is possible to feel very good, tell you that my life has gone on and that I have had children and lived a great life despite my illness. I also usually mention the importance of physical activity and finding a balance in life.
What would you say to someone who has a long-lasting flare-up?
If you have a flare-up, it might be a good idea to contact your rheumatologist or clinic. You may need to review your medication, add medication for a period, or it could be that your current medication no longer works and it is time to switch to another. It is also important to stay hopeful. There are so many possibilities.
What do you see as important in the future?
Healthcare, patient organizations and other organizations such as Elsa should be able to work together much more. There is so much knowledge and experience that we could use to increase the support in everyday life for those who have a chronic illness. When it comes to a diagnosis that lasts for a lifetime, most of a person’s time will be spent on their own rather than in doctor visits. And we need to consider people’s whole lives.
Listen to an interview with Maria Nylander - Reumapodden on RA (in Swedish)