"Together we are stronger"
Erik Renman lives together with Sandra Hansson who was diagnosed with Juvenile Idiopathic Arthritis (JIA) a few years ago. Supporting, listening and talking to each other in all situations are some of the keys Erik shares as a next of kin.
Who are you?
My name is Erik Renman, 28 years old and I live in the city of Luleå in Sweden, with my partner Sandra. I am a mechanical engineer. In my free time, I like to ski, play hockey and be out in nature. I have been a member of Unga Rheumatiker's national board (Young People with Rheumatism in Sweden) since 2017. My father has had his rheumatic diagnosis for a long time and when my partner received the same diagnosis, it felt natural for me to get involved.
What was it like when your partner became ill?
Sandra was around 23 years old when she was diagnosed. She had had problems with her body at a young age and never really improved. She later had problems with her jaws, which at first was thought to be due to a martial arts injury. When she came to a jaw specialist, she was referred to a rheumatologist since the doctor suspected rheumatic disease. Sandra was eventually diagnosed with JIA when it was detected that she had many of the typical symptoms ever since she was a child.
How was it for you during that time?
It was a bit like a crisis. It was something that just had to be processed and handled. Thoughts like "you will never get well" or not knowing what the disease means, is hard to deal with. For me, it was important to support Sandra in many different ways, everything from just listening, to carrying grocery bags and everything else practical.
How has it been since then?
There has been an improvement in Sandra's disease since the diagnosis. One reflects on it less and less, and since she has received help and medicine that worked, things have improved for her. She has simply had fewer problems and lives her life practically as usual.
Does everyday life differ from how it was before?
From one perspective, we would probably have been more active if she had not been diagnosed. We need to take it a little bit calmer. But with that said, I feel that the diagnosis also has brought us good things. We have gotten to know each other better, to see each other's abilities and what can be done that particular day. It has required quite a lot of communication to get to where we are today. It is not always easy for me to see when Sandra is feeling worse because she's good at putting up a brave face and suffering in silence. We can talk more about it today since I have become better at seeing such things more clearly over time. It feels like we are stronger together now than we would have been without the diagnosis.
Sometimes you are forced to strike a balance in what is doing the most good. Some fun things are so valuable that you choose to do it even if it may mean that you have to pay a little extra from your health a few days later. After a hard work week, we may be thinking about whether we should visit Sandra's nephews as planned. In a situation like that, we still usually come to the conclusion that it may be exactly what she needs to do, even if it will take some of the energy, it is something she wants to do and feels good about.
What are the keys as a next of kin?
I would like to be a little bit boring and say to be supportive, that's number one. Try to build on the relationship you have, keep up good communication, listen and find out what the other person feels. Be patient and tolerant with the fact that some days may not turn out as planned, but it can become really good nonetheless.
Something important is also to choose to share your thoughts. Sandra has become very good at bouncing things off me and communicating. She simply chooses to share things with me about how she feels and thinks, and I am very grateful for that.
What do you think about the future?
A clear part of the future is about having children since planning is needed when you are taking certain medicines. We both want children in the future and have discussed how we look at it and when it feels right to start a family. We have spoken to the rheumatologist and made a draft plan with a time interval that feels reasonable to us.
Then there may also be thoughts about what it would be like if the disease became more challenging in certain periods, but we know nothing about that, so we have to deal with it then, if there will be such times.
Have you applied for professional support?
Through the rheumatologist's care team, Sandra received support from a counselor, and the team also said that she could bring her partner. It is a good thing to attend care meetings, because it is better to get information and ask questions together, than if you are on your own. We help each other out, everything from medication and other things that are related to the disease. For example, Sandra has had a tough time with fear of the syringes and there I have been able to support and help.
So, take part in what you can, both in providing support but also to increase your own understanding of your loved one's situation. Then everything will be so much better and easier in everyday life!