“I focus on things I can do something about.”
Elin Hellgren 26, has had a rheumatic condition for as long as she can remember. To feel good, she believes it is important to focus on the things she can do something about. Planning her days is also important, even if the disease sometimes changes her plans at the last minute.
Who are you?
My name is Elin Hellgren, I’m 26 and I live just outside Gävle in a small house with my hairless cat Harry. I like to write, take photos and generally be creative. My family has a big place in my life and means a lot to me. They have always been there for me, and it’s thanks to them that I am in a good place right now despite the difficulties I have faced.
How was it when you received your diagnosis?
I have had my rheumatoid disease for almost 23 years, to be exact. It was the autumn of 1998 and I think I received help relatively quickly. I have been told that I fell over and hit my forehead and wrist. I was in pain and it just didn’t get better. Over time, more symptoms came and we tried many times to get help from the healthcare system. We learned quite quickly that it was something rheumatic, but it was difficult to work out exactly what type of rheumatism it was. They initially said it was juvenile rheumatism (JIA), things have shifted in several different directions when it comes to the precise diagnosis.
My current diagnosis is juvenile polyarthritis seronegative, but this has changed over the years as it has been difficult to correct. Recently it has also tended towards psoriatic arthritis (PsA). Because I’ve been ill for as long as I can remember, I can’t remember what it is like not to be in pain, or to live without pain and all that entails. It’s a different life compared to “healthy” people. Now my focus above all is to find medication that works. I’ve gone through a lot of them and now we have to start again.
In December 2014 I suffered a medical injury in connection with my last foot surgery. It led to several complications and a long hospital stay. I lost muscle mass and recovery was tough. Today I can walk a little with support, but most of the time I am in a wheelchair. I get assistance at home with everyday life, which means I can manage the things I need to do and at the same time do things that make me feel good.
What was it like growing up with a rheumatic condition?
At school, it was often tough. I couldn’t hang out with my friends in the way I wanted, because I didn’t want to have to repeat a year. But I couldn’t do both, no matter how much I wanted to. Weeks were school and weekends were rest so I could endure another school week. It was really boring when you really wanted to hang out with your friends.
It was also difficult when the time came for me to take over responsibility for my own care. From having my mother manage it all to being able to handle it all on my own was a big step for me, because there are so many different situations and things to keep track of. It becomes a bit like a job, and it takes a lot of time. I think that’s something most people wouldn’t understand.
How do those around you see your diagnosis?
Many people have preconceived notions about people with rheumatism because it’s not always very visible on the outside. It was easier for people to understand when I was always in a wheelchair, for example when I had just had an operation. But when I can walk some days and have to sit in the chair on others, people sometimes just don’t get it.
Another thing that is difficult is when you’ve arranged something that you then have to cancel because you don’t feel up to it. It’s the disease that causes that, not me. But even though it’s not my fault I still feel guilty and try to explain. I think that can be difficult for people to understand.
Knowledge is the most important thing, to understand the disease and make it more visible. It’s the same with planning things well in advance. I don’t know how I will feel next week or even tomorrow, and that can be hard for people who don’t understand my situation.
What is important for you to feel good?
For me, it is important to focus on things I can do something about, and not waste energy on things I can’t influence. It’s very easy to say that and something else actually doing it, but I’m really trying to work on it.
A quote that helped me a lot is "focus on the step in front of you, not the whole staircase". I can easily let my mind wander and start worrying, and I am not alone in that. Most of us think too far ahead and worry about things unnecessarily. Of course, you think about the future and how it will be. But for me it has been very important to try to focus on today and what is happening now.
As I have limited energy, I notice that everyday life is better when I plan. I create a plan and structure to make it easier for myself and get a better overview of what I am spending my time on. That means I can make sure I do the things I have to do as well as what I want to do and can look forward to. It makes me calmer and feel I am on the right track.
I also write a lot on my blog, which has become a bit like therapy for me. I can point my friends and relatives to it and ask them to read about my experiences there, so I don’t have to explain what has happened a thousand times over. That means we can focus on other things when we meet. At the same time, maybe I can help someone in a similar situation to me. I hope I can contribute to increased knowledge and understanding and help people not to feel so alone.
What would you like to say to someone with rheumatic disease?
We often associate diseases with negative things. But that’s only because they often have negative effects. I think it’s just as important to try to reflect on what they have given you that is positive. Because even if you experience things in life that are difficult, you usually come out stronger afterward.
Deal with the setbacks. I have learned to deal with adversity quite well. You have to recharge mentally and then fight your way through the next thing you face. I think my disease has taught me that.
Appreciate life and the little things. I’ve learned to live more in the present and to enjoy the little things in life. Above all, just to appreciate and make the best of my good days. Because you never know when it will come again, or when you’ll face another difficult period.
Get a broader perspective. I have gained perspective on things because I have been through a lot. It has made it quite easy for me to get to know other people's situations. I understand that many people have things they struggle with and that it may explain why they behave in a certain way.
Look at things realistically. I think I have also learned quite a lot about being realistic. Don’t try to build a fantasy world that will not come true. But, of course, you have to dream. I would rather feel that I am being confronted with "reality", than that I should create something that is not real.
I have learned a lot. Thanks to the fact that I have been ill for so many years, undergone many examinations and treatments and had several complications, I have learned a lot. I have learned so much about various diseases, which I probably would never have done otherwise.
I have met many nice people and made many friends. Last of all, and perhaps the best thing this disease has given me, is all the friends I have made and all the people I have met. This is something I am very grateful for.
If you want to know more or take part in Elin's everyday life - follow her blog (in Swedish)