How chronic conditions complicate my social ventures

I have Juvenile Idiopathic Arthritis (JIA) and I was diagnosed when I was seven years old. JIA is an autoimmune inflammatory joint disease and it affects approximately 1 in 1.000 children every year. Although, with proper therapy some patients are able to lead normal lives, it is considered to be a lifelong disease.

In my case, the disease affects all the large joints and few smaller joints in my body. My symptoms are joint pain and stiffness, fatigue and also occasionally inflammation. This means that I have to consider carefully before doing things like going out with friends or travelling, because my body is constantly battling itself and this takes up a lot of energy.

Here is an example of the tough process that I go through every time I am asked to go out. It was the beginning of September and I had just started my first year at The University of Tartu. The freshers’ week was in full swing and I was asked to go to a party, to meet the people from my course. The day of the party I had to decide: should I go or should I stay in? I chose to go simply because I felt that if I missed it, I will forever be a social recluse. The party was starting at 11 pm and I already felt the need to take a yearlong nap. My knees and ankles were hurting me and made it difficult for me to move. I really should not go but I was really determined so I made myself a strong cup of coffee, took some painkillers, and got dressed.

When I finally got there, I was still exhausted and in pain. I managed to stay there for an hour, but then I decided to leave. I was home just before 1 am. I did not make any new friends, I just chatted with some acquaintances from high school. Furthermore, later I found out that no one from my course was there.

It’s not easy for people with chronic conditions to do everything they would like to, whenever they want to. Their daily schedule is very dependent on how they are feeling at the moment so it is difficult to make promises to attend an event or just simply meet up. It is very important to be supportive of a friend with a chronic condition. We want to socialise, but our bodies often hinder our ability to do so.

Lembe Kullamaa

Lembe Kullamaa

Lembe Kullamaa is 19 year-old Estonian, who was diagnosed with Juvenile Idiopathic Arthritis (JIA) when she was 7. Currently she is an active patient advocate, raising awareness on different chronic conditions and disabilities. She represents the Estonian Chamber of Disabled People and has been a member of EPF Youth Group since autumn 2014.

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