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Blog: Living Mighty Well

My Search for a Diagnosis - and for the Support of the Doctors

Over the course of the last five months, as a mere teenager, I've been diagnosed with a number of new chronic illnesses: Dysautonomia (POTS), Chronic Fatigue Syndrome and Gastroparesis.

My journey to diagnosis was not an easy one. In fact, I visited over ten doctors before receiving my first one, with many people and physicians along the way telling me that it's “all in my head." I advise anyone else going through this is to NEVER give up hope, as your symptoms are REAL. You have to keep pushing for better doctors and treatments; you're your own, and best, advocate.

Throw out all of the doctors that deny you or make you feel crazy because YOU know your body better than they do. 

My diagnoses make it clear that there was indeed something wrong with me, and it was not, in fact, "all in my head." 

Dysautonomia (POTS) means that my autonomic nervous system does not work correctly; therefore it causes symptoms such as fainting, tachycardia, and low blood pressure just to name a few.

Gastroparesis means that my stomach can no longer digest solid foods, so I'm on a mainly liquid diet. As there is no cure, I take medications to manage my symptoms, for POTS, like Fludrocortizone, which is a steroid that helps bring up my blood pressure. For Gastroparesis I take Erythromycin (an antibiotic which is also a motility medication), and omeprazole (helps prevent acid reflux) and Ondansetron (anti-sickness medication). In the past I've taken Cyclizine and Domperidone (a motility medication). The condition that I struggle with the most is Gastroparesis, as food is in our culture, everything involves food and it's extremely difficult to eat in public situations especially because it can make me ill for days afterwards— it's horrible.

 

This is why it is so important to have a good support system to help you throughout this journey. My support system is comprised of my family and friends. My mum has been my greatest supporter, as she always advocates for me even when doctors don’t believe me. My friends have also helped me through this journey—my TRUE friends who genuinely care about me.

One gift that chronic illness has given me is that I now know who my true friends are. They are the ones who have stayed by my side throughout my fight and made a conscious effort to be understanding even though they cannot see how much I'm truly suffering on the inside.

Before getting ill, I loved performing arts and I still do. Being ill has taken many things from me— I've lost friends, the ability to eat solid food and I've missed out on a lot of normal teenage experiences, but I'm not going to let any of this stop me! Although I'm ill, I haven't changed as a person. I am still myself and if anything, I've gotten stronger throughout this experience.

 

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