"My loved ones have given me the power not to be so affected by the disease"

"My loved ones have given me the power not to be so affected by the disease"

Five years ago, Inger Olofsson was diagnosed with rheumatoid arthritis. Since then, she has had to adapt. But she has also learned it is important to find the strength in yourself to do what you want. “I do not like being forced into anything. So I do not want RA to force me to do anything.”

Who are you?

My name is Inger Olofsson and I am 64 years old. These days, my life is grandchildren, households and a little fun, like meeting friends. It is very different from the life I had before. Before, there was a lot of agriculture, cows, small children and parents-in-law who had to be taken care of. I have also run a bakery here on the farm for 25 years. It's been a lot of work! I have also been a bit in politics as a part-time politician. I was used to busy days and nights.

How did it feel when you were diagnosed with RA?

I know exactly when I got sick. It started on February 27, 2011. I caught a cold was coughing and had difficulty breathing. I had problems for several months, no one knew what it was. Eventually, I was diagnosed with lung cancer, which was scary. After a while, however, the doctors realized their diagnosis was wrong and that I had an inflammation in the bronchi that looked like a tumor. I was treated with a lot of cortisone and it took a year before I became almost well. But I still didn’t feel great.

In the spring of 2014, I got a terrible pain in my arms, shoulders, legs and knees. All my major joints were affected. Mother's Day 2014, I became so ill that I was admitted to the hospital. Then I found out that it was RA I had. I had a lot of disagreements with my body back and forth during these last few years. Then I decided to retire. So today I take everything at a different pace and I feel very good about it.

What were your thoughts about the diagnosis?

I have had pain in my feet for a very long time, maybe 25 years. When I think back to when I was 15 years old, I had similar symptoms then. When I got the message that I had RA, I thought it was nice that it was not cancer. Those thoughts had scared me. I thought that "a little rheumatism can not be so dangerous". Then I realized it affects my life quite a lot. But now I feel good most days. I have tried several different treatments and now I think we have found the right one for me.

What are the challenges with RA?

It's hard to talk about what it's like to other people. They think I have a little "pain here and there" they can not see. A challenge I had with the disease before I started treatment was that I could wake up at half-past three in the morning with little pain in one knee. Then I had a hard time even getting out of bed by eight o'clock. It has been tough that the flare-ups can come so quickly. It has felt unreliable and unpredictable. Sometimes it has been hard that I have made promises to do things that I then could not keep. I have simply been in so much pain that I have not been able to complete it. I have been very affected. Now I'm better at setting my limits and knowing how I need to handle things.

What makes you feel good?

I have all my grandchildren who I feel so good about. They are absolutely fantastic and treat me like a normal human being even though I may be in pain. They do not think it is a bit strange that I have crutches sometimes. Then I feel good about hanging out with my friends and having a great time. We travel a lot to the heat. It's a different kind of warmth, I feel good about it, and that I relax especially at those moments.

What do you usually do on the days you are in pain?

I have a very easy time adapting and then I think "Yeah this really awful. Evil, It's over". I just have to wait. If I have the strength, I cook and fix what works. Then I get a little angry with my husband. When I have a lot of pain, I usually bathe with ice-cold water. It calms it down for a while.

How do you want your loved ones to treat you and your RA?

My husband is so kind. He never complains, even though it also affects him when I have a relapse. I know myself from how sad it is when he is a little sick sometimes. There are times when we cannot do anything special but have to take the day as it comes. Sometimes I go and jump on my crutch. The children have grown up now, so they have not been so affected, but they still care.

Are there any thoughts and questions you would like answered about RA?

I have been thinking about what people suggest about what to "do". I have tried to eat gluten-free, avoid meat and instead more vegetables. Unfortunately, it had no effect on my illness in general, but it may work for others. I tried for about five months but now I eat more or less the same as before.

I wish I could exercise more. I have always been active. I did water aerobics, exercised, ran and walked. I had wanted the courage to keep doing all that but it sometimes hurts me both during and after. A dream scenario would have been to have my own coach. Someone who understood what hurts and cared about me! I have been to several gyms but no one knows enough, not even those who are naprapaths or physiotherapists. I had wanted someone with top skills for me and my illness. Not someone who feels sorry for me but instead challenges and energizes me.

What are your tips for someone who just received an RA diagnosis?

I can tell them how I think and what I have done:

  1. Make sure you feel good about yourself. It is important: you can do this. I think my loved ones have given me the strength not to be so affected by the disease. It has meant that I’ve been able to cope even when it has been tough.

  2. Find the strength in yourself to do the things you want to do. I do not like being forced into anything. That's why I do not want RA to force me to do anything. Have fun and let your life be bigger.

  3. Do not hide! Do not let the fact you are in pain stop you. Don’t stay at home feeling upset, but go out if you can. Do not feel sorry for yourself.

  4. Try to talk to others, it can be part of healing and accepting. For me, it is important that people do not have to wonder why I look "weird" sometimes. They need to know that I'm in pain and I'm not afraid to show it!

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