"Prioritize your inner health and dare to talk about it"

Sophia Stenberg has realized how important it is to take care of her thoughts after getting a chronic diagnosis. Expressing feelings, getting to know herself and what she needs to feel good is something that Sophia today prioritizes in her everyday life.

I had my first child when I was 27 years old, and eighteen months later my second was born. Life had begun to change and my priorities were different. Like all new parents, I put myself in second place and all my focus was on my little babies. But suddenly I felt worse and worse in some parts of my body and when I was crying myself to sleep because of the pain I knew I couldn’t ignore it anymore. I had to find out what could be wrong.

After a few months, I had an appointment with the rheumatologist to get my diagnosis, which was Spondylarthritis (SpA). My feelings when I finally had an answer to what was hurting so badly, of finding there was something wrong with me that I hadn’t imagined, were mixed. I could get help at last, but at the same time, it was hard to arrange all this treatment while we had two small children to take care of at home. They demanded all my attention, but I also needed peace and quiet to process my own feelings.

Daring to ask for help, processing and acceptance

I didn't really have time for myself, and we started to feel it at home. I wasn’t happy, I was tired and had a short temper. I almost never talked about how I felt because I didn't want to complain. I went home and buried myself further down in a dark hole that was difficult to climb out of.

One day my husband sat me down and said that this situation was not sustainable for me or for us anymore, that I needed to get a handle how I was processing my situation. He wanted me to accept the help of a psychologist which was offered through the rheumatologist. It was the toughest, but the best, think he could have said. I pulled myself together, swallowed my pride and called.

I received many valuable tips from the psychologist, but the best part was that they sent me to a rehab center in Boden. I was there for two weeks with specialists in long-term pain, and my new life started there. The most important thing I learned, which is still useful, is that my pain will always exist in one way or another. I have accepted that now, and have learned to carry it with me everywhere, sitting on my shoulder. But I don’t let the pain take over. My other emotions are stronger.

Accept the bad days

I allow myself to have a bad day because I know how to get out of that feeling. I let my husband know when the pain is particularly strong, so he knows I'm going to be a little low that day. I know he is there even when everything feels crap. I try not to keep all the negative emotions inside me, otherwise, they will get bigger than they need to be.

I started a blog because I always enjoy writing, but also because it was a perfect way for me to get all my thoughts out. At first, it was more for my own sake, but then I felt I wanted to help others. I wanted others in my situation to know that they were not alone, that it is okay to feel all the emotions that emerge from a condition like this.

The Internal conflicts that come from not feeling strong enough

I have a negative emotion that has appeared several times in different contexts, and I struggle with it. As I am currently on sick leave and working 50%, our income is not as large as before. I feel that my husband deserves someone better. Someone who can contribute more, someone who keeps up the pace. Someone who does not go in and out of the hospital and take a lot of medication. He deserves someone who is healthy.

When those thoughts come, I get a little sad, and then I think I can try to turn it around. We stayed together when I was healthy and he still stands by my side 14 years later, eight of which I have been sick. He must really love me because he stays. If that is not proof of true love, I do not know what it is.

Be open to dialogue about the difficult things.

I wish there was more talk about how hard it is for our psyche to endure pain on a daily basis and about how it affects the people around us. It is also important that we should not be too proud or afraid to ask for help. There should be more talk about how things like our sex life can be affected. Things that can be perceived as embarrassing and private are often what we need the most help with.

Talking about my illness makes me feel better

At first, I was ashamed of having rheumatism. But now I feel quite the opposite. I like to talk about it with everyone who is interested. I have noticed that not many people know much about it, not from my experience anyway. It is a condition that is not always visible on the outside, so it is difficult to understand how bad it can be. When my friends come up with questions related to my diagnosis, I feel happy and grateful. Talking about it makes me feel better, I also feel that by sharing how it affects people I am doing something important.

I challenge myself and try new things

I have also become much more forward about challenging myself. I have noticed it helps to set small goals that you can work towards. It started with the Vårruset fun run three years ago and after that I started climbing mountains, which is something I had never done before. The feeling of conquering a mountain, even though it might actually be very small, is indescribable. I aim to get up to Kebnekaise in the near future, which has not been on my bucket list before. I took my motorcycle test this summer, which is something I never thought I would be able to do.

All this would be more difficult if I didn't have my husband by my side. He peps me up and keeps me going. I get to do things at my own pace and always he is there if I need him. When I feel low, he knows exactly what to say to make me laugh and start to feel better. He accepts me for who I am and personally I like myself so much more after my diagnosis. I am tougher and more determined. And I think that is because I have learned to say out loud how I feel and am not afraid to feel bad sometimes.

Changing thought paths - a process worth the investment

The biggest change I have made is that I do not see everything in a negative way. Life got so dark and boring. Even though I had my family around me, I felt alone. It is so important not to let the negative thoughts take over. You have to accept that it is not something that changes from one day to another: it is a process that is worth all the time you invest in it.