Dysautonomia Awareness Month 2016 Guest Posts. Alexandria: When Weight Can Become an Impediment to Diagnosis.

Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian, Alexandria. Read about her experiences trying find a diagnosis as an overweight patient and living in a rural area and send her some love. Alexandria is definitely not alone in this issue and I hear of many patients who find themselves in the same situation. It really is an issue that needs to be spoken about and addressed. Thank you Alexandria for sharing your story.

My name is Alexandria. I am 25 and from regional Victoria, Australia. I was diagnosed with Inappropriate Sinus Tachycardia in April 2016 after suffering debilitating symptoms for the year previous. I cannot work currently, so I spend my time running a baby name website, which is a huge interest of mine, and keeps me occupied. I love spending time with my family and partner, as well as being kept company by my old dog and kitten. My hopes for the future are to find ways to spread awareness and hope for invisible illnesses.

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Finding a diagnosis for an invisible illness can be a tough journey. We each face the struggle of finding people to believe what we’re feeling, investigate those symptoms, and refer us on to specialists. This is especially hard when you’re not considered a standard patient for the type of disorder.

Within the dysautonomia community, it’s very common for people to be of an average or slightly-below average weight. But for me, I started this journey overweight. Unfortunately, there’s a lot of bias towards obese people within the medical field, and I often found that my problems would be pinned on my weight without any questions or investigation. Discussions of seeing a blood pressure specialist due to suspicions of a low blood pressure disorder were completely off the table, with one doctor even diagnosing me as having high blood pressure without putting a cuff to my arm.

Of course, being in a rural town did not help this journey either. In a city, you have choices. If your doctor isn’t any good, there’s hundreds more around you – there are even GPs that specialise in certain areas. However, in a small country town, you are very limited; once you’ve crossed one doctor off your list, you’ve eliminated 33% of your medical options.

When I did finally get a referral to a specialist, I was very nervous that I was going to hear that it’s my weight again; that my efforts to lose it aren’t enough, and there’s nothing wrong with me apart from the fat on my body. I was so relieved when this specialist finally looked at me, and saw me as a whole person. They listened, took into account my symptoms, and ran all the tests that were required. That week, I finally got my answer: I had Inappropriate Sinus Tachycardia, a form of dysautonomia.

Although the trips to the city from my country town are long and draining, and the cost of travel and food is high, I did not regret seeing someone who would give me a chance, and see that not everyone fits the standard model of a dysautonomia patient.

I feel that it’s so important that doctors keep in mind that weight should not be the sole focus. Excess fat can certainly create a multitude of health issues, but there are also a multitude of health issues that exist that aren’t related to weight. By focusing on weight alone, my past doctors took away years of time that I could have been in treatment. Having a doctor that could see that made all the difference in my life, my treatment and even the way I saw myself. It made me feel like my symptoms were valid, and that I had a place within the dysautonomia community. I encourage all doctors to view patients as a whole, and take the time to investigate symptoms, so we can find our answers and learn to live our lives. 

Alexandria.