This is really hard for me. It took me several attempts to write this post. I’ve written a sentence, reread it, and deleted it. Written it again in a different way, crossed half of it out and rewritten that part again. And when I finally had it all together I just left it untouched in my draft folder for almost five months. Although I use the writing process to come to terms with personal problems, this one has been a real battle for me. I have a secret that I carry with me now for some years. It is not a nice one nor one you are eager to share with other people. When mentioning it, normally people do not know what to say. Often they are unsure what it means and how it affects me. The most frequent reaction is: “Oh… I’m sorry. What is it exactly?” Now I think it is time to reveal this secret together:
I have an autoimmune disease. It is an undifferentiated connective tissue disease. In a simpler term: rheumatism.
Diagnosis And Treatment
I was diagnosed with it in summer 2014 after my very first big exam session at university. Although the finding was shocking, it was to some extent a relief. I finally knew where the pain was coming from. I finally was able to name the source. And I finally was able to do something against it. However, more than one year later, I am still trying to figure out with my doctor the right medication as my body did not react very well with the first medication. It is a long way in order to find the right treatment and I can ensure you, it probably will take several attempts and even more years of waiting. It is especially challenging as autoimmune diseases often tend to show different patterns and are hard to diagnose. Nevertheless, having been diagnosed correctly is a big step in the right direction, because from there on one can concentrate solely on the treatment.
The experience of my very first acute flare up last summer (one can also call it like a rheumatic attack) belongs truly to the scarier things I underwent in my life. I do not want to go into more details as it is anyway quite difficult for me to write about this topic. Only a few months later I experienced another backlash. I had to spend some days in hospital in order to eliminate any connections to my disease. Fortunately, there could be no link made as it had another cause. It was definitely not the best year for me regarding my rheumatic disease. Though, I want to make one point clear. Through this setbacks, I grew stronger and could build up more confidence that I am able to manage future drawbacks.
University And Rheumatism
It all started in summer last year with my very first rheumatic attack. Of course, the flare up had to begin in my exam session and due to the pain and inflammation in my joints, I was unable to write. Fortunately, our university is well equipped for cases like mine and I was able to take my exams with the help of a writing assistance as I was even unable to write on a computer during this flare up. After the summer exams, I marked it off and thought of it as a single event. However, during the exam season this January I wrote my first test like all other students by hand. But only after a few minutes I realised that the disease flared up again with all the stress and pressure. In spite of the enormous pain, I kept on writing because I got an exam to write and I learned damn well that it would be a huge waste just to stop and give up. After the two hours test, I knew for sure that I do not want to experience this again and therefore I went to my doctor in order to get a request to write future exams on a laptop. I was really relieved as I received the permission.
Though I never thought that I would worry so much what other students would think. Writing an exam in a room with other students would obviously expose me because I would be the only one writing not by hand. I worried days and nights about what the others would think of me. Especially because when there is no exam season I am perfectly able to write by hand (except I have a flare up). I spent way too much energy on asking myself how the others would react. And I tell you, it was all for nothing. Because when the next exam took place and I sat in front of my laptop no student was asking me. Why? Because everyone was obviously busy with their own test and exam-nervousness. So I’ll be sitting the upcoming exam session again in front of a laptop and I really need to remind myself that I need to care less about what others may think.
However, I probably would not have been able to overcome these obstacles without the support I received from my closest family and friends. Having a supporting environment is essential for the journey. In difficult times, it is important to distance yourself from people who are not supportive and show no understanding or sympathy for your problems. Attach yourself to the persons who give you strength and make you happy. I am so glad that my family, friends and my boyfriend were helping me in this demanding time. So just focus on people who try to understand your situation.
To all people out there with a disease: It is okay not to be okay. It is okay to have a shitty day. It is okay to cry about it. It is okay to have self-pity. All these things are okay if they are limited. Do not drown yourself in self-pity, but it is perfectly normal to ask yourself: “Why me?” We need those days. But keep in mind to try to see the positive things which live has to offer. I know how hard uncertainty is and how it can use up all your energy. I know too well how this hurts. The uncertainty of how the disease may develop is extremely energy-consuming.
Nevertheless, when I was in the hospital it made me realise: Be grateful. Take a step back. And live life to the fullest.
Be grateful. Be strong. Take a step back. And live life to the fullest.