“The most important goal for me has been to maintain my quality of life”

“The most important goal for me has been to maintain my quality of life”

When Inger Erlandsson was diagnosed with rheumatoid arthritis (RA), she decided that the most important and clear thing she could do for her quality of life was to exercise. It was partly about the scientific evidence, but also about gaining control.

Who are you?

My name is Inger Erlandsson, I am 72 years old and I live in Kalmar with my husband. We lived in Linköping during our professional life and moved here 10 years ago and love living by the water. We have two sons and five grandchildren as well as a daughter-in-law and another partner who are an important part of our lives. In my free time I enjoy exercising, reading a good book and being out in nature. As a professional, I worked in leadership development, and personal development in particular has always been something I have been passionate about.

How was it when you got your diagnosis?

It all started with me getting a swollen hand. It had a lot on right then because of my dad's funeral and I was not worried about a pain in my hand because I had had pain in the same way in the other hand the year before. I visited the health center and the doctor was a little confused. They asked if I had rheumatic disease in the family. They took blood samples and a couple of days later the doctor said the samples showed positive for both RF factor and positive anti-CCP and I was referred to a rheumatologist. Once at the rheumatologist, I was diagnosed with rheumatoid arthritis (RA) and started medication immediately.

When I thought about it afterward, I could remember that I had had a little pain in my body before that swollen hand, that I had woken up one morning and could barely walk due to pain in my knee. Then I had also felt exhausted, but I thought it was mainly due to other circumstances in life. So something was going on in my body but there were such long periods between the events that I could not see a connection until afterward.

How was the period after the diagnosis for you?

I have great knowledge from my professional life when it comes to coping with crises in theory. It was a tough period anyway, and I was sad to receive the diagnosis and all the worries it brought at the beginning. It was difficult at first, but I have a great self-awareness that has developed over the years. Like many others, I have suffered from difficult events earlier in my life, and you learn from that.

What I did then was try to think and make rational decisions. The clearest, most important thing I could see to do was exercise to feel better. I set up my days to include an hour and a half of exercise and have been doing it almost every day now for three years. It can be anything from cycling, walking, walking with poles, or exercising in the pool.

I think I thought both that there is scientific evidence about exercise and rheumatic disease which is reassuring, and that I could have the feeling of control; that this is something I can control and do for myself.

Although physical activity was already a part of my everyday life, after the diagnosis it became more important, with structured exercise every day. It may not be a model that suits everyone, but exercise does not cause any side effects. Being physically active has played a big role in my quality of life and makes me feel as good as I can. It has been like a lifeline for me.

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Have your thoughts changed over time?

My thoughts about the diagnosis have changed over time. In the beginning, I thought about it a lot, in parallel with other thoughts. I was worried and anxious and was afraid. What would my life be like in the future? Will I have a heart attack or will I end up in a wheelchair? Now that is not the case at all; it does not dominate my thoughts at all anymore. I think it's about me being basically a very harmonious person. I think you have some kind of level of harmony and happiness that you return to after crises in life. I learned things about both myself and the disease. Life changes and things happen to everyone.

What has been important to you?

For example, I noticed in the beginning that it was unusual for me to feel bad if my grandchildren were visiting. I have noticed how important it is to try to increase my quality of life in every way I can. To want to be pain-free, to keep working or whatever.

Another thing that has been important to me was that I trained as a research partner. Being a research partner means you are asked about different research projects and become part of the research group's work offering my experiences of the disease, simply being a representative of the patient group. (read more about becoming a research partner here)

In the beginning, I had different doctors every time I visited, but now I have had the same rheumatologist for quite some time and that has meant a lot. I wish everyone could have that. It is a very special and in a way unequal relationship, but if you get to know each other, that feeling decreases and now I feel listened to and I think we find it easy to talk to each other.

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Advice for someone with rheumatic disease?

The most important thing is to find the right medicine. If you then have the time and opportunity to exercise, you can reduce or even avoid the fatigue that is a problem for many.

My life is just as good as before. I am as balanced as I was before and I can do whatever I want. I've lowered the bar for some things and I'm okay with that. For example, I liked walking before, but now I get very sore feet when I walk too far. Then I have to find new things to do. When I take my needs into account and adapt, life becomes as good as it was before.

Another thing is not to commit too much and get to know what I need. If I'm away for one night, I do not want to be busy the next evening. I put myself and my health first.   

I have not had a flare-up for a long time, but when I do get them I treat myself to a little extra luxury in the form of good food, a good book, watching a TV series, or something like that.