“The world turned upside down”
Paulina Pettersson was recently diagnosed with RA and is still working on finding the right medication. With support from loved ones and her clinic, she is taking one day at a time and feels closer to coming to terms with her condition.
Who are you?
My name is Paulina Pettersson, I am 24 years old and live in Skellefteå. I work at a swimming pool and live with my partner. I really enjoy hanging out with friends, going out for good food and exercising as much as I can, even if sometimes that is limited.
How was it when you received your diagnosis?
It started with swelling in one of my knees and in my hands. I sought advice from a healthcare professional who thought it was inflammation due to overexertion. After a while, things got worse. I had some blood samples taken, and the doctors suspected the pain was not due to overtraining. I was told over the phone there was something "rheumatic" in my blood. I was very shocked and did not understand what it meant at all. I just remember that my first question was "can this affect young people?" and I got the answer that it was much more common than I thought. I was referred to the rheumatologist in Umeå immediately.
The time between that phone call and the visit to the rheumatologist in Umeå was tough, and I have a hard time remembering it clearly. I was in so much pain, I couldn’t walk properly and I had problems with my whole body. At the rheumatologist in April 2019, I underwent a lot of examinations, which eventually resulted in my diagnosis of rheumatoid arthritis (RA). Although I was very well treated and got to meet the nurse, doctor, physiotherapist, occupational therapist and counselor, it was difficult to keep track of all the information. It was a dizzying period in many ways.
What happened next?
When I had received the diagnosis, it felt like the brakes had been put on my whole life, and everything was up in the air. There were so many questions and thoughts running through my head. “What's happening to my life now? How will it work with jobs and education? ” I have not been able to live as I did before in the same way. Being a young adult, when so much is happening in general in one's life. It feels unfair. For example, I didn’t enjoy hearing from my friends as much: it took too much energy to stay in touch. Today that part of my life feels better, but I have had a tough time.
What help have you received?
I got to be part of a rehabilitation group at the clinic. It was mixed age, but everyone was older than me. But it has been very useful for both my body and my mental wellbeing. I felt like I was starting to get somewhere, mainly with regard to acceptance.
We talked a lot with the occupational therapist about that sort of thing, how to try to deal with this fatigue, mindfulness, managing pain in general, and how to be in the present and deal with how your body feels right now.
I have met counselors a few times and we have talked a lot about how I relate to my old self, how I was before. it's been such a short time since my diagnosis. I have no time perspective with RA yet - I don’t have enough distance.
What has been good about the clinic is that we have talked so much about how I think and feel, what is hard and what is easy. It almost feels like I've been very selfish and talked about myself, but that's probably what I needed: people who listen and understand. I'm really grateful for that.
Do you have tips for anyone who is in the same situation as you?
It's okay to be sad. I really want to say that it's okay to say things are shitty if they are. For me, my whole world was turned upside down. Try to talk to someone close, try to get your feelings out. It takes time to get to the point of acceptance but you have to get your feelings out. It will get better.
A shoulder to lean on. My partner has shown so much understanding and has made me feel that it is okay to act and feel the way I do. He has just listened and sometimes responded to things, but above he’s just been there to support me.
The shock phase is natural. I wish I could grab my own shoulders and tell myself it's okay to feel like this. You suddenly live in a different world and it will be weird for a while, and your shock is completely normal.