“My diagnosis became my new strength”
Beryl Svanberg had a long journey before she was finally diagnosed with ankylosing spondylitis (AS). Today, Beryl works to help other people with long-term pain.
Who are you?
My name is Beryl Svanberg, I am 64 years old and I live in Kungälv, Sweden. I have four children and five grandchildren. My great passion in life is music, which I share with several of my family members. I listen to music when I exercise and at all times of the day, from morning to evening. Today I work as a business developer at the Swedish Worker’s Educational Association (ABF), and before that, I worked at the Swedish Rheumatism Association.
How was it when you got your diagnosis?
My symptoms started back when I was 16 or 17 years old. I had back pain and no one knew what was wrong. I also got inflammation in my jaw, which led to my jaw dislocating several times. After several visits to the dentist, I was sent to an odontologist.
For several years I was passed around in the health system and received anti-inflammatory medication, cortisone injections, cortisone treatments, and painkillers. Eventually, I had a period when I was so sick I couldn't get out of bed to the bathroom. Then I had four children and everyday life became problematic, to say the least. Finally, I met a family doctor who understood what was wrong and immediately sent me to a rheumatologist. At the first visit, it didn’t take long until I was diagnosed with ankylosing spondylitis (AS), also known as Bechterew's disease.
I had been going through my troubles for so many years. I remember a doctor I had met several years earlier who said only men are diagnosed with AS, which led to no further examination. Eventually, I had jaw surgery and have since needed six more operations, probably because I went so long without diagnosis and treatment. For me, the development of better medication was revolutionary. I can’t describe what a big difference it has made, although, it can still be difficult to find the medication that suits a person perfectly.
How was the time after the diagnosis?
I was lucky that my rheumatologist sent me to the Spenshult rheumatology hospital in Halland in Sweden. I was there for three weeks and got to meet a fantastic physiotherapist. She made me understand that only I can fix my life situation besides having functioning medication treatment. I’d gone from being very active previously to being terrified of it, so it felt good to hear what I could do. The physiotherapist helped me cross the threshold towards becoming who I am today. She told me it was not dangerous to exercise; actually, it’s on the contrary. That insight would be important for helping me feel good in my body. I also went to a so-called “AS school” where we were the first group of women: previously it had only been men. It was very valuable to meet people in the same situation as me.
Later I started to get involved in the Rheumatism Association in Kungälv, Sweden. And after I attended a course with the Swedish Rheumatism Association, they got in touch and asked if I wanted to start telling people my story. Since then, I have lectured in many places in the world: Paris, Rome, Berlin and India. Somehow my diagnosis became my strength. After a while, I started working for the Swedish Rheumatism Association and was involved in developing the concept of educators in pain schools and osteoarthritis schools. That is where ordinary members of the Swedish Rheumatism Association act to inspire other people living with the disease. They have found strategies they can share to make everyday life work.
What has been most important in your mission?
During my mission, I have met so many people who have become my closest friends. I have also shared life stories with many people. When you hear a person's story you sometimes feel it's a miracle they’re even sitting there today. And I feel that if I have helped a single person cross that threshold, it's worth all the preparation and time I put in.
Pain patients are a group who has been mistreated by the health service, the social insurance office, the employment service and relatives who sometimes stop listening. For me, it has been important to both be a voice for this group of patients, as well as stand together with them.
What are the common challenges faced by people with long-term pain?
One of the challenges for or a person with long-term pain is to be understood by the people around them. It can be difficult to explain how your body behaves, especially when you do not understand it yourself. I also meet many people who are high-performing in all areas of life. In that situation, it is important to put extra focus on helping them to learn how to prioritize the things that make them feel good in the long run. It’s about changing perspectives, rethinking and asking themselves "who am I doing this for?".
When I lecture, I usually describe people around me as split into three groups. Everyone asks the question "How are you?" but the meaning is different for all three. Some who ask this question are not so interested in the answer, others are just very curious and maybe not genuinely interested, while the last group cares about you. This is a clear example of how people can choose in their everyday life who they should spend their energy on. When should I say "fine, thanks" as a standard phrase, and when should I take the opportunity to ease the pressure on myself and tell someone how things are, right now.
What are your tips for getting started and keep going?
Find yourself a sparring partner. A top tip is to have a sparring partner. Make plans and ideas with each other that you can implement together. Determine days and times when you are going to workout together, it is so much harder to skip your training if there are two of you. It is also a good strategy to enjoy both a social meeting and your exercise at the same time.
Give your workout wardrobe a makeover. Wear good clothes to train in: it helps you move better and gives you a good feeling. And of course, jokes aside, buying a pair of expensive training shoes and letting them stand enticingly at the door makes you more likely finally to put them on.
Take time to breathe. If you have the chance to get outside, take it whenever you can. It does not have to be a long time or with a defined destination. Just being outdoors, getting some air into your lungs and feeling the sun on your face will give you more energy.
Make a plan. You absolutely must plan your activities. It does not have to be complicated, plan to, for example, cycle on Wednesdays and do yoga on Fridays. Create a routine! Make your hacks to get more exercise into your everyday life in a way that suits you. I have a rubber training band I carry with me everywhere I travel.
Set a goal that suits you. I have set a goal to walk 10,000 steps a day. Unless it creates stress, maybe a step goal suits you fine. You can start with just 1,000 steps to begin with.
Treat yourself. Something important for all of us is to start enjoying more of the little things in life. Treat yourself to some really good tea, pick some nice twigs and put them in a vase, settle down with a good book, sing in a choir or just hang out with family and good friends. What are the little things you value in life? Start there and try to do something enjoyable every day.