When Your Own Body Fights Against You

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 Setback

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.

flare up, blaze

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.

Support

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.

Final Thoughts

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.

afortnightaway, red coat, umbrella

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.

afortnightaway

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12 thoughts on “When Your Own Body Fights Against You

  1. It’s strange, I always thought of your blog as a source of positive thoughts about life and all the time you were fighting against this illness. Thank you for sharing your experience and struggles. You are a really strong, generous and beautiful being. All my blessings and positive vibes to you. Have a nice day 🙂 :*

    Liked by 1 person

  2. Manche Menschen wissen nicht, wie wichtig es ist, dass sie da sind. Wie gut es ist, sie zu sehen. Wie tröstlich ihr Lachen wirkt. Wie wohltuend ihre Nähe ist. Wie viel ärmer wir ohne sie wären und dass sie ein Geschenk des Himmels sind.
    Danke für deine Blog-Einträge, deine mutige Offenheit und die Herzlichkeit die du in deinen Worten ausstrahlst. Auch wenn dein Tag sch#… (bescheiden) war und du am Boden liegst, raff dich auf und sei stark, für all das Schöne, was dir im Leben noch widerfahren wird. Für Wünsche und Ziel, die du erreichen möchtest und für Menschen denen du eine Stütze sein wirst oder bereits bist.

    Liked by 1 person

  3. I love your positivity! I know how hard it must have been to write this. My mother has RA and suffered her whole life without any doctor finding what was wrong with her.
    Many disease are invisible illnesses. I hope you never have to feel embarrassed because of a modification. While I hate that you have this, I’m glad you were diagnosed early and have such a great support group. I hope you don’t have any more flare ups and that disease is managed. *hugs*
    Ps. You should look up the spoon theory.

    http://juliefylife.blogspot.com/

    Liked by 1 person

    • Thank you Julie, for your lovely comment. Means a lot to me!
      I’m so sorry that they weren’t able to diagnose it earlier. I know what it means when you aren’t able to start a treatment as my grandmother suffers from RA too and she had the same problems like your mother.
      I guess I’m kind of lucky that it runs in my family, because then it was somehow obvious what it could be.
      Luckily, the disease is quite managed, as I respond well to the new medication.
      Spoon theory? Never heard of it but I’ll definitly google it right away 🙂
      Thank you again for taking your time and leaving a comment. xoxo

      Like

  4. Living with an autoimmune disease is difficult. I have one as well (Hashimoto’s Thyroiditis). It takes a lot of courage to open up about such private things on such a public forum. That’s wonderful that you can use your laptop to take your exams! And it shows great determination and will power that you fight through to continue your education. You’re an incredibly strong woman!

    Like

  5. Thanks for sharing, and I totally understand how difficult it is to put it in words and share publicly. I got RA since 8 years and it truly is a roller coster. I’m glad you have a good support system and that you can use your laptop for your exams sounds fantastic.

    Liked by 1 person

      • Currently my RA is considered to be in remission thanks to good medication. However, I do experience lots of joint pain, and as of yet they have not figured out why but all of my blood test, x-rays etc show nothing. For me the difficult part has been the fatigue and recently it got so bad that I’ve been on sick leave for 5 months and started working 2 hours a day last week. I’m really happy to be back working a little again. Doing exercises, even when I’m in pain has helped a lot, although I have to confess that sometimes it is really hard to do due to not feeling good. 😉

        Like

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