Marie Louise shares her story of living with immune thrombocytopenia (ITP)
Marie Louise found out that she had immune thrombocytopenia (ITP) when she attended a blood donor clinic at the age of 18. The result of a blood test she’d taken as part of a school biology project revealed that Marie Louise had a rare blood type and this prompted her to try to help others by volunteering as a blood donor.
“We did a school project in biology where we had to test our blood to find out what blood type we had. I had one of the rare blood types, so I wanted to be a donor so that I could help others,” recalls Marie Louise, who lives in the Danish city of Roskilde. “And then through the first time of donating, they had to test my blood to see if everything was OK, and then they found out that there was something wrong.”
In retrospect, Marie Louise suspects that she had already developed the condition when she was 16, but she and her family had no idea what it was, because some of the symptoms mimicked common symptoms of simply being a teenager.
“When we look back,” reflects Marie Louise, now 24, “there were a lot of symptoms that we back then just thought were because I was a teen. It wasn’t just a part of me, it was a part of the illness – so things like bruising easily and being tired and having this overwhelming fatigue was something that I had to manage. And I had to make room for it in my everyday life so that I could get my day to fit together and not be tired all the time.”
Like many people who live with ITP, Marie Louise cites fatigue as her main symptom. “I feel that the doctors don’t recognise fatigue as a symptom. And that’s really hard when it’s your main symptom. They don’t connect ITP and fatigue because you can’t measure fatigue. You have to help them understand that it has a big impact on your life.”
"Fatigue impacts my life in a big way. I can have days where I just can’t get up. I can try and I have things to do. And the worst thing is that then you start getting annoyed with yourself because you just have to pull yourself together. But you just… it won’t work."
"I don’t want the illness to control my life"
Marie Louise is determined to get on with her life. The secrets of her success? Staying active and planning ahead.
“Instead of taking a nap,” Marie Louise tells us, “I sometimes do activities that recharge me. I do ceramics, I do knitting, and I read and I watch TV. I don’t want the illness to control my life and the way that I’m supposed to live. So that’s why I do a lot of scheduling. I plan my day and my week a long time ahead to make sure that I have a good life, even prioritising between my family, my friends, my school, my job and my rest.”
ITP, a rare autoimmune disease, reduces the body’s platelet count and increases the risk of bleeding. The disease has a substantial, multifaceted effect on quality of life, and people living with ITP can find that the condition can improve or become worse without any clear cause.
Being diagnosed with ITP can be worrying for anyone at any age. Marie Louise remembers being frightened. “It’s hard to be diagnosed when you’re 18 because you’re young and then you get this diagnosis and it’s scary. And on top of that, the doctors kind of speak their own language that you don’t really understand. I was lucky that I have my mum who works in the health department, and if I had something that I didn’t understand then I could always ask my mum when I got home and then she would translate it for me.”
"I see my friends doing a lot of things that I also want to do, but it’s hard when you know that you’re limited because of your ITP. You have to find the balance between where to push through and just ignore the symptoms and where to hold back so that you don’t burn out."
Now studying at Roskilde University for a bachelor’s degree in social science and psychology, Marie Louise intends to go on and complete her master’s. And then her ambition is to make her pottery a full-time activity. “It gives me more flexibility when it comes to working hours. And that way, I can plan and make sure that I get my fatigue managed in a better way and that I can do whatever I want with my life.”
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