I never expected to be on dialysis by the time I was 30, but here we are. I’ve been on dialysis for almost two years and quite frankly not a single second of those two years has been easy. You see, it may seem easy on the outside. You may think I’m “lucky” because I don’t work and you may wonder what I possibly could be doing all day. You may pass judgments on me because you don’t understand why I’m not doing more since I look so “good.” But looks can be deceiving.
Right before starting dialysis, I was actively working two jobs. I worked full-time as a chef and production manager as well as part time in retail. I was on my feet for almost 12 hours everyday as my kidneys were failing. I would leave retail shifts with my feet so swollen they were spilling over the top of my flats. Every night, I’d wake up about 3-4 times to pee and at least once to throw up because of this intense burning nausea I’d get regularly. I was constantly tired from the lack of sleep. I’d get incessant cases of hiccups that would be super painful and last for hours. I had to be extremely careful about how much potassium and protein I ate and had extreme food aversions which made eating in general hard. I was constantly thirsty because of the toxins that continued to build up in my body. I was too proud to start dialysis when I needed to, because I was afraid of the judgment that would be passed on me by other people. “Why can’t she work on dialysis?” is a common question I’ve heard, generally not asked directly to me, but asked about me to other people. And I know if it hasn’t specifically been asked, it’s been thought which, as someone who has been an extremely hard worker my whole life until my health took a turn for the worst, truly hurts my soul. Our society places our entire importance on productivity, so when you become an unproductive member of society, you’re judged harshly regardless of the circumstances. And that caused me to push myself longer than I should have.
When I started dialysis, most of those symptoms went away, but a whole slew of new ones started. I am not waking up to pee 3-4 times per night, I’m waking up or just not sleeping in general due to insomnia. I developed a whole different set of food aversions now and have to be aware of how much protein, potassium and phosphorous I’m consuming as well as making sure I’m taking my binders. I now have to give myself Aranesp injections so my body can make red blood cells, as it’s no longer doing so. I have to severely limit my fluids despite the fact that I’m always thirsty and like drinking water. I am deeply fatigued and struggle every single day to complete the most basic of tasks, like keeping up with the housework and taking care of our pets. I developed a uterine issue that resulted in the growth of a borderline tumor that caused damage to both ovaries so they had to be removed and now I’m on hormone replacement therapy for life. When I do decide to push the limits and try to have a normal day, like visiting family or taking a trip to the beach, I pay for it. I legitimately am so exhausted for at least two days after and have to recover in bed for most of each day. My body is actually shutting down as each day passes, and I’m only going to continue to feel worse. Yet as this is all happening, people are still asking “Why can’t she work while on dialysis?” “What does she do all day?” As if surviving isn’t hard enough work. Not just physically, but emotionally too. Having your ability to have children taken away from you at 30 years old because of your disease is a pretty big pill to swallow in itself. Trying to come to terms mentally with feeling your body deteriorate is even harder.
I’ve only just listed the medical side of my life and I’m already exhausted and overwhelmed. On top of all of this, I still have to live my life. I still wake up every morning (these days after my dialysis treatment) and make breakfast for my partner and get his things ready for work. I still feed the animals and let the dog out. I still make myself my meals, go grocery shopping and shopping for household essentials, do the laundry, drop and pick up the dry cleaning, clean the house, make sure the trash and recycling are taken out each week, etc., all while making time for my doctors appointments, dialysis supply orders and doing dialysis treatments every single night. On severe fatigue days, I have to physically push myself to do these things because as we all know, life goes on even if we feel like we can’t get out of bed. I also now make self-care an absolute priority, so getting outside for small walks or just to sit and observe nature have become crucial parts of my survival and maintaining my mental health. My life hasn’t stopped just because I’m on dialysis, so this idea that I am sitting around doing nothing in the meantime couldn’t be further from the truth.
Not many people can endure what I endure every day. Not many people know what it’s like to have your dreams limited by your physical health and they end up taking their good health for granted. If you are someone who has wondered why I can’t work while on dialysis or what I do all day, realize the questions you’re asking say far more about you than they do about me. Your self worth is wrapped up in productivity and you are projecting your fears of not being adequate enough onto me. I don’t fear not being adequate, I fear of dying while on dialysis and not getting to live my life to the fullest. If you can wake up everyday without that fear, then count your blessings and be grateful you’re not someone who can’t.