FAQs


How was you diagnosed with your illnesses? 

My diagnosis with Ehlers Danlos Syndrome took a really long time. From the age of 9 - 16 to be precise, with more hospital tests, visits and procedures than I can remember. My problems as a child stemmed from my stomach and gastrointestinal issues so I've been passed from different hospitals and doctors from the age of 9 to get to the root of my stomach problems. However I also developed many other symptoms which were overlooked, I was also incredibly weak on my joints, had zero muscle tone, was chronically fatigued constantly, had masses of joint and bone pain that were being passed off as growing pains, dizziness and chest pains. I received lots of common general diagnosis’ from the doctors when they couldn't actually figure out what was wrong. A lot of these issues were then blamed on the fact I had multiple bleeding stomach ulcers at just 13 years old. It wasn't until by chance I got to see a doctor in 2010 ( a paediatric gastroenterologist) who pieced everything together from my internal problems to external problems and he told me I had EDS. I've since also been diagnosed with Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalopathy and I am in the process of trying to get a Mast Cell Activation diagnosis. 


What is Ehlers Danlos Syndrome?

Ehlers Danlos Syndrome or EDS as it can be shortened to is an invisible, chronic, incureable disabling illness. For those who may not know what it is exactly, Ehlers Danlos is a genetic connective tissue disorder. Types may vary but the majority of us live a low quality life, housebound and in daily chronic pain. EDS causes a lack/fault in the collagen of the body, this cannot be replaced. Collagen as I have always been told by professors and doctors, is visualised as the glue of the body that holds everything together. Just to put this into perspective collagen is found in the majority of our body. Things such as our muscles, tendons, tissue, blood vessels, skin, bones, ligaments, internal organs etc. Without it, everything is stretchy, loose and over elasticated. Our symptoms range from our internal organs becoming overly stretchy, sluggish, slow and painful to our external joints being overly and extremely hypermobile therefore causing them to sublux and dislocate multiple times a day without warning.

As much as basic online reports may state, it is not just a case of stretchy skin and bendy joints or being able to contortion your body into weird positions, this is often infuriating for those who have this illness to read. It's very serious, debilitating and rarely diagnosed. I personally have pain in every joint and organ possible on a day to day basis as well as spending most of my day in bed with chronic fatigue and too much pain to be able to function. On the rare days those of us with the condition manage to get out, the majority of us depend on wheelchairs.



Why I started this blog?

I decided to start Chronic Teenage Tears when I was 19 because I felt so isolated in my own battle with my illnesses. I would search for blogs by someone of similar age that felt very parallel to my life with illness, however I could never seem to find them. I had no one around me that could relate to my situation, I felt abnormal and different, especially to those of similar age. When you are young, you usually have many friends who are relatable to your life and situations, however when you are ill this disappears and you often feel incredibly alone in your situation. I started this blog with hope that my honesty would allow others to not feel so lonely in their battle and confirm that what they were going through, to have confirmation that somebody else in the world was going through it too. I don't like to be depressing on my blog, however I do like honesty because I think its honesty in illness that makes others battles not seem as frightening, isolating or abnormal.


Why is this blog called chronicteenagetears?

I decided to name this blog 'chronicteenagetears' as a play on words for what I thought made up my life at the time. Chronic, being that my illnesses are chronic, they've lasted for over 8 years. Teenage, because when I started this blog I was 19 and had spent my entire teenage years as someone who had a debilitating illness in bed. All I've ever known from a young age is pain and illness, therefore I will forever be able to relate to a teen or young adult in the same situation who loses all aspects of a typical 'teen life' no matter how old I may become. Although this blog has put me in touch with many people of different ages, it has connected me with people of the same age which has really helped me in my own life to know that young people all over the world are like myself. Tears, well because those who have illness will know this happens all too often when you live a life in pain. There are so many down moments, relapses, unanswered questions, bad days over good, that it just felt more than fitting for a blog about rare illness. I also knew I wouldn't be the only person with an illness feeling this way and that people would be able to relate to this aspect that comes in this type of situation.