I’m from Belgrade, Serbia. My name is Magdalena and I’m 20 years old. I have twin sister and we both suffer from multiple chronic illnesses.
My diagnoses are hemiplegic migraines, nonspecific connective tissue disorder, postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, scoliosis, kyphosis, chronic tension headaches, hypermobility syndrome, hypotension, mitral valve prolapse, heart murmur. I also suffer from chronic pain and chronic fatigue.
Due my connective tissue disorder I’m extremely underweight and only weigh 33kg. My mental health also is not great. I suffer from anxiety, social anxiety, depression and I have some OCD habits.
I started to feel symptoms when I was only 5 years old and my health hasn’t been great ever since. But I think everything started to be more serious when I was 12. I never was “healthy” but last 3 years are the most difficult.
My life before diagnosis was much more the same… I always had health problems and I had good and bad years and periods in my life. So diagnosis didn’t change much for me. I feel worse and worse as the years progress. But healthier times I was much happier. I was able to walk more and to stand longer. Every new symptom and health problem makes life more difficult, but getting the right diagnosis is helping me to understand my health better, and also helping me to accept myself.
My days look much more the same. I don’t have a lot friends due to my different look, people avoiding me so I spending days home with my twin sister listening music, reading, spending time on social media and sometimes when my health allowing me I enjoy to cook. In the afternoon I always go to my dad’s house where sometimes I spending time with my cousins and go to walks.
The most challenging thing for me is explaining to people what is wrong with me. Listening to comments about my looks, and trying to find friends for life. I can’t do a lot of things like people my own age. I’m too weak, I don’t have enough energy. I can’t work, I can’t go out in clubs and have a social life. My quality of life is completely different from theirs.
I wanna tell people with the same diagnosis that they are not alone and that life is much more than diagnosis. You can find small things to make you happy even if life is not perfect.
To people who don’t have these problems, I wanna tell them just one thing: “before you judge someone, think twice.” I learned that is okay to be different. Even though other people are not accepting, it’s okay. That doesn’t change who you are as a person. Eventually you will find people who accept you.
Also I wanted to add that I’m currently waiting to see results of genome sequencing analysis to get more specific diagnosis of my connective tissue disorder.
I’m not anorexic. I’m underweight because my connective tissue disorder stopped my body from developing properly. I hope I will get right diagnosis and proper help soon.
“Magdalena thank you for sharing your story and giving us a look into your life. You are a warrior keep on fighting! I understand where you are coming, people have said the same thing to me over the years. You aren’t alone and us Zebras need to stick together. Take good care of yourself. You aren’t a lone in this, please feel free to message me anytime.” -Anna
If you would like to learn about some of the conditions here follow the links below.
What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/
What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
Inappropriate sinus Tachycardia explained http://www.heartrhythmalliance.org/aa/us/inappropriate-sinus-tachycardia
Mitral Valve Prolapse http://www.mayoclinic.org/diseases-conditions/mitral-valve-prolapse/home/ovc-20307842
Nonspecific Connective Tissue Disorder https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp
Learn more about OCD http://www.cmha.ca/mental_health/obsessive-compulsive-disorder/#.WWZngbHF2f0