"I might not be able to do everything that I want, but almost"

"I might not be able to do everything that I want, but almost"

Anne Hjorth von Glehn has lived with her rheumatic diagnosis since childhood. To live in the present, be grateful for family and everyday life, and not compare too much with others is vital to her.

Who are you?

My name is Anne Hjorth von Glehn, I'm 43 years old, and live in Bromma, Sweden, with my husband and our two children. I'm trained as an economist and work for a government agency. My family enjoys making excursions in nature and bringing a packed lunch. During holidays we spend a lot of time in our summer house. I really enjoy being out there, having sea eagles next to the house. We also have a boat, which gives us an incredible feeling of freedom. Another great interest is traveling.

What was it like when you got your diagnosis?

The rheumatic signs came all of a sudden when I was nine years old. During summer, we were in the countryside, and I woke up one morning having difficulties walking. We had already been in contact with the hospital since I had suffered from lung disease. I got help from the hospital very quickly and was diagnosed with juvenile idiopathic arthritis (JIA).

I remember the support from the healthcare professionals as very good. I liked my doctor, and I went several times to the pediatric rheumatology clinic. My joints soon got worse, above all my hands and feet, which meant I had to go through surgery plenty of times. Besides JIA, I also have scoliosis of the lumbar spine.

At that time, there weren't the same treatment options as today, which I think contributed to the fact that exercise for rheumatic patients was more about mobility and low-intensity training. But I got help quickly from an occupational therapist and a physiotherapist. Around the millennium turn, I was a bit scared of the new treatment options—you didn't know about the side effects. I have throughout the years tried different types of drug treatments that have helped me from time to time. After I graduated from high school, I was in remission for a couple of years and only needed painkillers.

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What is important to you in your everyday life?

I get great support from my husband and my children. My disease and how I feel affect the whole family. Also, the help I get from my two sisters and my friends in my everyday life makes me feel great when we are together. My parents also used to be there for me, but unfortunately, they are no longer alive. My job is also an essential platform for my well-being. There, nothing is about my disease, but all the focus is on the job itself and my colleagues, which I appreciate. Another thing that has meant a lot to me is the possibility to repeatedly take part in rehabilitation in a warm climate, to get some sun during the winter.

For me, the disease usually goes up and down. After a terrible day, the next day might be better. I try to stick to that way of thinking—it’s not going to be this bad forever. Probably it will turn, and I will have some better days, and even excellent ones.

What can be difficult in your everyday life?

One thing I experience as tricky in my everyday life is that I don’t trust my body. I don’t rule my body—suddenly, it’s just a horrible day. It feels lousy to have to say, “You go out sledding, I’ll stay at home.” Not knowing what is around the corner is a strange feeling that I will probably never get used to, even though I’ve had the disease for so long. I can control that I have a good cup of coffee in my hand and create an environment that makes me feel good, but completely controlling an autoimmune disease isn’t possible. 

Sometimes I think there is a vast lack of knowledge in society about controlling and affecting autoimmune diseases. I can’t cure myself but do everything I can to feel good in my environment, take care of my body, take my medicines and help my body in the way that I can. But I can’t control or conjure the disease itself. There is often a good thought behind all the advice from people around me. Everybody wants to find solutions and help, but I think many chronically ill people often wish for less fragmentary advice.

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How do you handle your life with a chronic disease?

Rheumatic disease holds a lot. Some experience a few limitations, others many. It’s difficult but also important not to compare yourself with others but to try to relate only to your own well-being at the moment. My body is worn out after many years, and I have quite a few limitations in mobility. Even when I’m in a good period, I can only reach a certain level.

I have realized I have limitations that are part of my life. I don’t really like the word “accept”—it’s more about handling. My life is great, just the way it is. I have my husband, I have my children, and we enjoy life. I might not be able to do everything that I want, but almost. 

It’s OK to break down and then come back again. You easily get into a negative spiral, thinking “I’m not capable of doing this.” A close friend of mine said it’s OK to break down sometimes to come back again. And I guess that’s what you do—you come back. I try to work a lot with these kinds of thoughts. The disease is exhausting and nagging, but I also know that I can handle it.

Try not to compare with others. I can feel low when I hear about others feeling great and having done nice things, so I try not to compare myself with others but run my own race and not set the goals too high.

Get help from experts. An important tip is to get help from a physiotherapist specialized in rheumatic diseases. They can help adjust training to you and your conditions. To me, it has been essential having someone who both knows my disease and learns what I’m capable of and what my limitations are right now.