I’ve become a master at pretending. I pretend so well that sometimes I don’t even realise that I am doing it.
I pretend to be fine, I pretend to be tough, I pretend to not care.
I push people away whilst pretending to be oblivious & nonchalant about the bad things that are happening to me.
At the age of 24, most people my age are busy freaking out about what they are going to do with their lives… where will they go, who they should marry, where they should live, what will they be now that they have their degree?
I’m sitting here wondering how I will live.
I am currently in a clinical trial for an orphan disease; hypoplasminogenemia. This disease has affected me since I was born and is a chronic illness that will affect me for the rest of my life.
I was diagnosed when I was very little with hypoplasminogenemia/ligneous conjunctivitis, and in all honesty, being sick never really bothered me at first. I was young and just assumed everyone else was sick a lot too and perhaps it was me… maybe I just complained about feeling poorly more than my three brothers or my friends .
I acknowledged I was different, my parents called me ‘special’ and my disease made me ‘one in a million’.
It was only as I got older and I started working that I realised that being ‘special’ and ‘one in a million’ wasn’t as glamorous as I had first interpreted… getting sick a lot meant less pay, and verbal and written warnings when I couldn’t keep up with work. This created tension amongst colleagues who assumed my disease was ‘made up’ or simply ‘not that bad’ as it wasn’t a well known disease.
Although I was diagnosed with this rare disease at a young age, there was no knowledge of what symptoms I might experience as I grew older. Everything was guess work for myself and the doctors that I would visit.
I spent most of my early 20s in and out of hospital with various ailments surrounding different parts of my body each time. However, it was never under the care of one doctor, who could tie all the symptoms together and formulate treatment for me. I was misdiagnosed with ‘conjunctivitis’, ‘asthma’, ‘’tonsillitis’,’quinsy’s’, ‘glandular fever’ ,’pneumonia’, ’polycystic ovarian syndrome’ or ‘post coital bleeding’ and “amenorrhoea’ to name a few! I was eventually referred to be seen under a Haemophilia Centre in London.
After Google searching for treatment, the Haemophilia centre in London contacted an American Doctor- Dr Amy Shapiro in Indianapolis who was working with a pharmaceutical company to formulate a drug to treat hypoplasminogenemia.
In 2015 I became part of the clinical trial in Indianapolis. Although I had to give up my job and my life to participate in this trial, I am so glad that I did. I’ve finally met other women and men who are like me; I’ve gained a support group where we can share symptoms and provide stories of experiences, whereas before I felt like I experienced this alone.
I am currently staying in Indianapolis for three months for this clinical trial, self infusing every third day with this incredible medicine which makes me feel invincible.
I cannot believe this is how ‘normal’ people feel?!
I listen to my brothers and my friends freak out and complain about their partners and their everyday worries…I’m also worried about that too, but I’m particularly anxious about how I will get this incredible medicine in the future, I’m worried about the quality of my life.
The medicine I am using as part of this trial is currently not FDA approved and will need licensing to become available in the UK, not only that but the cost of the medicine is in the tens of thousands and I’m considering whether or not I will ever be able to afford it long term if I don’t have funding.
No matter what, I am sick & sassy, I will always try my hardest to seem to my friends and family that I am not worried. I pretend that I don’t get scared and that I don’t care about sickness or death. I work hard to look okay, healthy and happy. I do this so that they can continue telling me about what everyday life event is worrying them and so they don’t have to worry about me.
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