“Luckily I was born stubborn”

“Luckily I was born stubborn”

Gunilla Hilborn has always exercised. So, it became a relief when she discovered that others with RA were able to enjoy physical activity. And she went out and climbed the Dolomites. Even on the days dominated by fatigue, she tries to do some activity that she will do her good, and support from her husband is important.

Who are you?

My name is Gunilla Hilborn, I am 53 years old and I live in Uppsala. I have been an entrepreneur for two years. I was working in business development when eight months ago I received an abrupt awakening: my  RA diagnosis. My family is my rock! My husband, two daughters, grandsons and grandchildren are everything. I don't think they really understand how important they are to me. It is so nice to be with my four grandchildren who are 8, 7, 5 and 3 years old. They always see the healthy in me and say, "What do you mean Grandma is sick? She is as she has always been! ”.

How was it when you got your RA?

I had a severe cold with upper respiratory tract inflammation at the end of December 2018. I sought medical advice as I also had a lot of pain in my hands, with swollen and reddened fingers. I had a hard time clenching my fists and my feet hurt from time to time. I visited the local emergency room and the health center several times and in March 2019 I met a doctor who wrote a referral directly to the Rheumatologist reception at the Academic Hospital. By then I could barely dress myself and had a hard time managing my work. Once at the rheumatologist, I was diagnosed with Seronegative Rheumatoid Arthritis (RA). I began to cry: it was a relief to know what was wrong. I had already thought I had RA, so it was almost nice to have it confirmed. I also felt fear - I had just started my business and had so many plans ahead. What would happen now?

How do you handle life with RA?

Knowledge is key, in my opinion, to life with RA. I read a lot and I ask a lot of questions. It’s important to look for reliable sources such as patient associations and other evidence-based research. 

When I first discovered Elsa, I read on the blog about several people who had been able to practice the activities they like, despite their pain.  That gave me strength! If they could do it so can I, I thought. That summer my husband and I went to the Dolomites and climbed via Ferrata, which are steep hiking trails. Sure I was in pain. But what a feeling to be able to do it!

"It is a blessing that I was born happy and positive and with a bunch of stubbornness, otherwise I don’t know what would have happened."

Working in the garden gives me a real quality of life. It gives me power, everything from tinkering with flowers to moving stones. My husband usually says that I am like Obélix, the guy from the Astérix books, always carrying around some rock. Today there are small stones that I can carry, I leave the big stones lying there right now.

Exercise and RA?

I have always exercised and enjoyed being physically active. There is everything from dancing, riding, cycling, go to the gym, jogging, skiing and climbing. Exercising helps me mentally and makes me manage my RA on the worst days.

There are some things I can no longer manage which I could do before I got RA. It can make me feel limited and sometimes make me sad when I am reminded of things I used to be able to do. I have got help by consulting a physiotherapist, as well as Hanna, the health educator at Elsa, and others who exercise with RA. I ask myself what can I do? Are there any alternatives? And it works! For me, it has been important to work with my own thoughts on this, to find solutions and opportunities and not to give up when it gets brave.

I have adapted my training and I feel so good about being physically active. It makes me more energetic and more capable in everyday life. When I have had to take a break from training, I also know that’s as bad as it gets. Then it is important to work mentally and go back and exercise. I know I feel so good afterward, both physically and mentally.

I am so grateful that I found Elsa via the Rheumatics Association's website, for the support I received and the increased understanding of my RA. Being part of Elsa's Health Project, which is a pilot study, gave me a boost. The project went on for eight weeks and together with Elsa's health educator Hanna Blyckert, we set up a weekly plan with leader-led workouts at a gym, strength training, jogging, walking and gardening. Hanna gives me training tips, alternative exercises for when I have pain and supports me along the way.

How is it when you are in pain?

I can't remember what it was like to be completely pain-free, so the pain is always there. Drugs have made me feel much better, but unfortunately, it does not get rid of all the pain. After a workout at the gym I have pain in my feet, hands and wrists, but thanks to the support of a physical therapist, Elsa and others with RA who work out, I know how to deal with it. My fatigue has gotten so much better and now I have basically only two days a week that I feel wiped out.

How do you feel about the future?

In the future, I hope that you will be able to get data and compare over time how people who were diagnosed with RA were able to work up to their retirement, and how they did over a ten-year period after they take their pension. My concern today is that my hands are my most important tool. I want to be able to work until retirement and still be able to use my hands after that.

What are your tips for someone who has been diagnosed with RA?

Accept that feelings come and go. It's okay to be sad, angry and feel despair. I chose to tell my loved ones how I felt and it helped me. Seek help and professional support if you need to. Accept emotions can emerge but take responsibility for yourself and your health with active decisions.

Be kind to yourself. Be smart, even when you just want to give up. We all feel good after exercise, even though fatigue dominates some days so maybe you can only do something small. Stretch at home in the living room, yoga or do some strength exercises if you can't manage a full workout. You will feel so much better afterward, both in body and soul.

Take someone on the trip. Ask others for help, or to give you an extra push when you feel a little low. Make a pact together. Me and my husband have an agreement with each other. I lift him when he needs a little extra, and he also does with me when I am struggling.

Elsa is a CE marked medical device that is registered with the Swedish Medical Products Agency.

Elsa is currently being co-developed by designers, developers, researchers, healthcare providers and patients across Sweden. If you have any questions or feedback, please feel free to contact: hello@elsa.science 

Elsa is partly financed by SWELife, Vinnova.

Elsa Science AB
Västmannagatan 4
111 24 Stockholm

© 2020 Elsa Science AB