On a June night in 2015, I went to bed perfectly fine, I had no symptoms of any form of illness. I was more tired than usual but I put that down to working night shifts. I woke up with Lupus, which sounds like a bold statement but that’s exactly what happened. I was fine one day and I was sick the next day. That was how quick it was, it was as if my immune system went into self destruct mode as I slept.
In an odd way, and I think this is common for anyone with a chronic illness, I’m waiting for the day I wake up healthy again. I’m not naive and I know that won’t happen, it’s more of a dream of mine, to wake up and feel like I can tackle whatever the world throws at me. I spent 20 years as a healthy person but I’ll spend more years unhealthy. I can’t remember what it’s like to be healthy and the healthy version of myself feels like a character from a novel. But, that is exactly what is it, that chapter of my life is finished, it can’t be edited and there’s no room to write more. It reminds me that at any moment life can be permanently changed and you have to learn how to walk on the new path you’ve been given despite it being rocky and uncertain.
I often wonder if I was destined to get Lupus, as if it had been lurking in the shadows waiting to pounce on me. I wasn’t particularly a sick child, the only major issue I had was developing something called Idiopathic Thrombocytopenic Purpura. I was hospitalised for it and when I told my consultant about it he thought it was “very interesting indeed”. I can’t tell you why that was interesting because consultants don’t elaborate on matters that they deem ‘interesting’. However, it has made me wonder if ITP and Lupus are in some way connected.
The chances of a father passing Lupus to a daughter is uncommon. When my dad was diagnosed, my parents asked what the risk was for my brother or I developing the illnesses, they were told it was highly unlikely. In a sense, it’s slightly mind boggling that I have both illnesses. The first time I met my consultant he informed my dad and I that our blood tests were very nearly identical, again, this was something he found very interesting.
Sharing the same illnesses has brought to light just how similar I am to my dad. The obvious, I have the same illnesses, knobbly knees and weird feet. And then there’s the little things, a liking for spicy food, enjoying sweets and fizzy drinks a little too much. We’re both quite mellow people but we definitely make mountains out of a molehills. If we get an idea into our heads, it has to be done there and then. I would say I have a lot of my dad’s mannerisms too. It’s strange how I look so much like my mum but everything else is from dad.
As children, my brother and I weren’t shielded from my dad’s illnesses. But, our parents didn’t go into great depth because a child wouldn’t have been able to comprehend it. We just knew his immune system didn’t work properly and his blood clotted easily. However, at 15, I had to do a project in my Health and Social class. I had to chose an illness and research it, naturally I chose dad’s and that was the first time I delved into his illnesses. The more I researched, the more frightened I grew for my dad. I was saddened to learn he had pain daily, in my naive head, I thought he only felt pain when the illnesses flared. I became intrested in his health, I’d watch him fill out his medication and I learnt how to give him his injections. It didn’t cross my mind that in 5 short years, I’d be in his shoes battling the same illnesses, why would it? Teenagers think they’re invincible and I wasn’t immune to that mindset.
Life can be tipped upside, I didn’t expect this, I had my 20s planned out completely different. Things happen that we can’t change but we can grow with it. From someone who has had their health stripped away from them…please treasure and be thankful for yours. You don’t know how lucky you are to have it.