1. Dialysis is not the end!
When I was diagnosed with impending kidney failure and was given medical advice for dialysis treatment, I had the recurring thought “This is the end”. An end to what? Life as I know it. Yes, life will never be the same again, but dialysis is not the end. Knowing that you are now dependent on machines to live, machines that can malfunction, is a very scary thought. But as you keep getting treatments, it becomes a part of your life. Yes, it is a major part, but not in the forefront of your every thought and decision. You have to plan things like events, outings, travel around your dialysis schedule. But that is the beauty of it, you still get to plan and enjoy life. You have to live a more structured life, but at least you get to live. You get to grow and strive for a better you.
2. People will make you crazy!
The first time you tell anybody about your dialysis, be ready. Be ready for what? Not empathy, not level-headed reactions with supportive words, not a pat on the back and advice to keep going. But to learn that how you don’t need dialysis because someone’s friend’s friend or relative’s acquaintance got over their kidney failure by doing such and such. These remedies range from herbal to religious to the totally outrageous! Without knowing a single thing about medicine, people are quick to prescribe treatments which are “guaranteed” to rid you of kidney failure and dialysis. By prescribing you treatments (a lot of which are so ridiculous that my head spins) these people enter into the smug mindset that “Now I’ve told you what to do and saved your life, now you should just get better by doing exactly what I said. And if you don’t, your illness is your own fault and not my problem”.
Mostly people think that they are genuinely helping you. I do not tell people about my dialysis, but sometimes it becomes necessary because of scheduling. Sometimes people become nosy enough to ask. But whatever the reason, I have prepared myself to tackle the inevitable prescriptions. Mostly I just smile and nod. There have been occasions I have gone into long drawn arguments or scared people enough not to bother me again. You just learn to accept this as a part of your life and believe that people mean well (mostly).
3. You go through the standard phases of grief.
I went through the usual stages like
Bah what do these highly trained medical professionals know, I will cure myself through prayers only, they will see! I will get spiritual treatment and blow everybody’s mind. Why get treatment when I can meditate and visualize and somehow force my body to regenerate. You simply keep denying that things are about to change. This does not last for long though.
Why, why me? What did I do to deserve this? My family, friends, strangers were subjected to my rants. Many people took them in stride. Some confused it as my mind collapsing along with my kidneys. But no matter how much people tried to comfort me, I got more and more riled up. I think of it as a process which enabled me to pour all my negativity out (on innocent bystanders). This too eventually stopped with some relapses.
Praying to make it go away please, I will become a good girl, I will change my life. I will eat healthy, exercise and become a saint. Just give me one more chance please. I prayed, I prayed long and hard for impossible things. I wishfully visualized. Then I gradually understood that some of the things happening to me cannot change. But I can pray for strength and patience. I can pray for little pockets of happiness and laughter. I still pray for impossible things, but I do know I get better solutions in return.
Then I entered a phase where I stopped caring. I stopped caring about myself or others around me. I became apathetic.
4. You may need more help than you think.
When you start dialysis, you understandably need a lot of help to live the best life that you can. This help includes various medical professionals and supportive family members. But people overlook the mental health side of things for a dialysis patient. According to many studies, dialysis patients are four times more likely to suffer from depression (AlDukhayel, 2015). I can personally attest to this.
After getting my diagnosis, I went through a bout of mild to medium depression. The realization that I will depend on machines to continue existing pushed me into a frame of mind that I can only describe as “being helpless”.
I had taken psychology as a subject back in university, so I knew I was dealing with actual depression. The thoughts swirling in my head ranged from how I am now a burden on my loved ones to how ugly I felt. It didn’t matter that the scars would only be on my arm, I just felt like this ugly blob. I was under a constant gray cloud of apathy.
But I was lucky, I was so very lucky to have such tremendous support from my loved ones. They knew when to leave me be and when to push me. They brought me back. Now I understand that my depression was very mild, I survived through it. But many people are not so lucky. They actually fall into a self-destructive spiral and even become suicidal. It is not uncommon to find people contemplating suicide on dialysis discussion forums. So along with other medical professionals, you may need a mental health professional just as much.
Dialysis is a huge change, and changes like these may severely affect your self-esteem and self-worth. Now I am in a much more positive frame of mind, but I do realize that I may fall into an abyss again. But I will be ready, I will seek help when the need arises. Life is too precious and short to wallow in a cloud of grief.
5. You will not always feel and look your best.
Most major medical problems are very taxing on your body and how you look. With dialysis, I suffered from sudden weight-loss to equally sudden weight gain. This is due to water retention problems. Another thing that made me feel self-conscious was the bloated face many dialysis patients suffer. People would unknowingly remark on how my color has darkened (another side-effect). Then came the real test when I began losing my hair copiously. I lost more than half of my already scanty hair. Most days you suffer from constant nausea. All this takes a toll on you. But you gradually learn to cope.
I cut my hair short and had it colored, to enjoy what was left of it. I put more effort and time into my makeup regimen, started to moisturize, started putting actual thought into clothes that would compliment me. In my mind, my scars became battle wounds, a source of gritty pride. I may not look and feel my best most days, but I cope. I know that I feel better when I put an extra effort into making myself presentable. It is hard but it is not impossible.
6. You will survive.
Dialysis is hard. But it gives you a lease on life. Not everyone will be eligible for a kidney transplant. So dialysis becomes their only option for survival. The process itself becomes easier as time passes. You learn to live with the limitations and to enjoy your life and appreciate its true value. You appreciate the futility of not doing your best every day. A sense of pride emerges on getting through the more difficult days. In short, you survive.
Dialysis is a life changer. It is a doorway to yet another journey through the ups and downs in life. Everyone copes with it differently. If you have had any experience with any life changing events or processes, please do share your thoughts. Maybe your words may give someone struggling a little hope.
Aldukhayel, A. (2015). Prevalence of Depressive Symptoms among Hemodialysis and Peritoneal Dialysis Patients. International Journal Of Health Sciences, 9(1), 9-15. http://dx.doi.org/10.12816/0024678