Every down has an up – view from a teenage kidney patient by Grace Acklam
Disease. A word that sends shivers down spines, and forms lumps in people’s throats. A word associated with the likes of the Black Plague and Polio. A word that is avoided and is desperately hidden from. A word that I face daily.
It seems to me that people are never open about their health; that when people are told they have a disease, or a defect, or a condition, they keep their mouths firmly closed and tell no one. Whether they want to keep it personal and fight their own fight, or think people will think differently of them, or are too scared to admit it, that is their choice, and they do it for their own reasons with which they are happy. This, however, is not my choice and I have no reasons. I instead choose to speak of my experiences to share with others and to raise awareness where others will not, so here I present to you a side that many are too afraid to expose.
From a very young age I have been told that I have a very rare form of chronic kidney disease, a condition that one in millions are diagnosed with. For those of you that know rugby, it’s the very same condition that took Jonah Lomu too early. One in which my immune system is attacking both my kidneys at once. Not my liver or my heart or my lungs; just my kidneys. There is no cure, and very little understanding of why or where it comes from. There is even less understanding to why if my immune system is attacking my kidneys, it isn’t also attacking the rest of my vital organs. It’s not though, and that in itself is something to be thankful for.
Since young childhood, I have spent many many days in and out of hospital, rigged up to machines, being poked and prodded with sharp and horrifically cold tools, and continually being handed new drugs. The thing is, as a child you have no idea what is going on and the only understanding you have is that which is related to you by your parents. Your doctors choose to talk to them instead of you, and you only know what your parents choose to tell you from that. The nurses come at you with big, long needles and you don’t get told that you’re about to have a very large amount of blood drawn from your arm to the point where you stand up and almost collapse. There is an expectation to take bountiful medication, and remember to take that same medication all on your own, which in the age of single digits, strips part of your innocence. How can one condition cause you to be so responsible and independent in the premature years of your life?
The times when I was supposed to be most full of energy, running outside exploring, were minimal because I was too afraid that the medication I took would cause me to black out, and be excluded from my friends for being weak, so instead I sat out and watched from the sidelines, and opted to choose my friends over my adventures. Undoubtedly though the worst part about being diagnosed as a child, is watching your family and those around you fighting your battle for you. They were the ones crying over the news instead of me, they were the ones listening to the doctors negative updates, and they were the ones that had to calm me down when I was confusedly kicking and screaming after operations and biting nurses when they came near me.
As time has gone by though, it is something that has become second nature, a way of life. I was given permanent doctors, I was given more settled medication and I was no longer being pumped full of unnecessary drugs just “as a precaution.” Gradually, annual trips to the hospital have reduced from seven or eight to three or four, and they have stopped being entire day trips and have become a few hours. More importantly though, my disease has become accepted, and is no longer a hot topic to be avoided at home, and finally after almost ten years, I am beginning to take control of my own situation.
Specifically, my condition is called Mesangio Capillary Glumerulo Nephritis, but if I ever were to announce that to someone they’d stare at me blankly, so instead I just tell people I have kidney disease. If you type Kidney Disease into a search browser, one of the most common responses is that kidney disease is a silent killer, so no wonder there is such an uproar when people initially find out. Personally, this is the biggest disadvantage of my particular condition. Other people’s reactions. If you walk up to someone and tell them you have kidney disease, they are guaranteed to react in one of three ways:
1) “Oh my God, I’m so sorry.”
2) “Are you dying?”
3) “Are you on dialysis?”
The first is by far the most common, and it also without a shadow of a doubt the most frustrating. It’s nobody’s fault first of all, so why is there a need for an apology, and secondly, what is there to be sorry for? I don’t tell people in search of a pity party, I tell people because they ask why I wear a Medic Alert bracelet which I’m not allowed to take off, so therefore if I’m not sorry for myself, what good will other people being sorry for me do?
The second is simply laughable because we’re all heading there eventually, just some faster than others, and even if I was (which at the moment I’m not as far as I’m aware of), what difference would it make? I’m still stood there having a conversation with them, and if it hadn’t been mentioned they wouldn’t have had a clue either way.
The final reply is mainly just ignorant. Kidney disease does not mean dialysis. Severe kidney failure of both kidneys and a need for a transplant means dialysis. People hear kidney disease and assume that the time you don’t spend talking to them you spend in hospital rigged up to a machine having your bodily fluids cleaned by a machine. That is incorrect.
It is also very frequently assumed that there is just one form of kidney disease and that it restricts you from living a normal life. That is also incorrect. There are in fact over one hundred and fifty types of common kidney diseases alone, where there is one out of every eight people in the UK who develop chronic kidney disease in their lifetime. If the aforementioned statement was true, one in every eight would be restricted in their daily life and the active population of the UK would decline.
Due to statements like this being thrown at me more often than not, I set out to raise awareness to the generalised disease and aim to reduce the quantities of people making such assumptions. The thing about living with a disease is that the biggest difference will be made by spreading awareness from personal experience, because people always seem to take you more seriously if you’re affected than if you’re not. There’s something that always seems to make it possible to get through to people. It’s the only time I appreciate the pity. People actually listen. When it comes to disease, if you don’t set out to raise awareness, nothing will ever change. Especially chronic disease, for which the definition is “non-preventable or disappearing”.
Overall, living with a disease is a terrifying thing. There is a permanent uncertainty that at any minute something could change and there would be no indication and no sign that there was a problem. I cannot go without saying though, that I’m one of the lucky ones in so far as mine was caught as early as only eight years in. Some are not so lucky, some have absolutely no idea until their kidneys are failing and they’re on dialysis and they need a kidney transplant that isn’t available. Every day five more people are added to the transplant list, and every year two thousand patients fail to receive the lifesaving transplant that they need.
People ask me if I’d rather not have known because I’m living in trepidation, but I’m glad I know and I’m grateful as opposed to scared. There is nothing more terrifying than living with something there is no cure for, and that is unexplainable, but it’s equally not something that should be shied away from. It is something that should be embraced and viewed as an opportunity. An opportunity to be less ignorant, to raise awareness, to make a difference. Knowing that I live with a disease has given me an appreciation for what I have. It means that every negative has a positive, and that every down has an up. It has meant that I have had an understanding of the less pleasant from a young age, and so have adapted to finding the good amongst the bad. I refer to what I have as a condition, not a disease, not because I’m in denial but because I know that branding myself as diseased will limit me, and that a medical condition can be cured, as the physical condition of a car can be repaired.
Do not mistake me, I still have bad moments where I realise that I have an overwhelming sense of responsibility to look after myself, and that I may need a transplant, and that I will need support, but those moments are few and far between. I don’t think that it’s possible to know what will happen in the future, because science is developing new methods and is making new advances daily. Awareness is widening and growing. Scientific understanding is becoming more prominent. Most importantly though, when living with a disease, you need to stay upbeat, and being permanently pessimistic will never solve anything, so when I start to worry I stop myself, because there is nothing that can be done in that current moment. At present I cannot decide my own fate, but I can decide how I deal with it. I choose to deal with mine with hope, and resilience, and optimism, and I think that for me, that is the only way to combat disease; to fight back.