No, friend…
It’s not all in your head.
The feelings you are feeling are real and you are not alone.
It’s depression.
Depression is a real trip. You go to sleep perfectly fine and wake up to suddenly being immobilized and not wanting to go to work. You can't get anything accomplished. As matter of fact, you're not even sure if you want to accomplish anything. You're overwhelmed and unmotivated. You don't have the energy to deal with people, places, or things. You either don't eat or overeat. All you want to do is sit in one spot and sleep, play games on your phone, or watch television and not be bothered.
Even if you haven’t experienced it before, you’re probably struggling with it now. An article published by Kidney International Reports (Shirazian et al., 2017) revealed that “depression is highly prevalent and is associated with poor quality of life and increased mortality among adults with chronic kidney disease (CKD), including those with end-stage renal disease (ESRD).”
Personally, having to manage feelings of mortality at the age of 28 was traumatic. Although I was super sick, I still had kidney function and was urinating and living my life despite the constant sick days. I knew that at some point the ball would drop and I would likely end up on dialysis. But that didn’t happen until I was 50. Can you imagine actively thinking about your mortality and how you would end up living your life for 22 years straight?
But then once I got on dialysis, the depression deepened. Now I’m staring mortality in the face every single day. My whole life is being managed around dialysis treatments and how I feel afterwards. The nausea, fatigue, sleepless nights, and fear of dying before I’m ready, the mental and emotional exhaustion from having to be “just fine” around your loved ones and friends so they don’t ask too many questions like “how do you feel?” (I don’t wanna talk about how I feel because if I were 100% honest, we’d all be depressed.) The fact that people don’t understand how you feel when you do try to talk about how you’re feeling. The frustration I get from subpar and even dismissive treatment in the dialysis centers, and the medical community refusing to listen when you say something is not right. The fact that I know more than my doctors about nutrition and managing the disease. Sitting in dialysis watching patients feeling less like patients and more like the center’s revenue check from Medicare. Coming to dialysis center to chat with your chair buddy on Monday and arriving on Wednesday to see that same chair empty because that patient died. And last, but certainly not least, realizing that you’re only alive because you sit in that chair three days a week and you’re subjected to whatever quality of care the underpaid techs, nurses, and doctors are willing to give…
It’s exhausting. Stressful. Lonely. And depressing.
I feel this way even though I have the most supportive husband on the planet. He’s my transportation to every single dialysis treatment I have had for two years straight. He hasn’t missed one medical appointment. He has been to every single kidney transplant appointment and test. He was there when I had surgery to remove one of my kidneys. He feels this disease emotionally and mentally as much as I do in a lot of ways. With all of this support every single day, I still struggle with depression. And I feel guilty. Guilty that he even has to deal with this in the way that he has. I don't want this for him.
You know when I first got on dialysis, I refused to be in support groups. I didn’t want to speak to anyone. When I would walk into the dialysis centers and sit in the lobby, people would speak to me and try to start conversations and I would ignore them. I’d be pissed off. I was too angry about having to be there in the first place. Seeing patients look so sickly, worn down, struggling physically, have missing limbs, look so sad…it was too much to bear.
I remember this one woman who spoke to me all the time when I first started dialysis. She was sickly, frail, and had ashen skin. She always came alone. I don’t care how many times I ignored her; she would speak every single time. All it did was make me more irritated than I already was. I felt bad about it, but I just couldn’t respond to her. Then one afternoon, she started telling me she had lupus and I immediately started blocking her out. I didn’t want to hear it. I was so angry, I almost said out loud, “Lady, if you don't shut your mouth and stop talking, I'm going to curse you out. Do I look like I wanna talk? I am not your friend and I’m not one of you people!” I had to literally put my hand over my mouth to stop myself from saying it out loud, and I suddenly realized that even though I knew dialysis would happen eventually, I had a hard time with accepting and coping with it. And I felt like these people were trying to initiate me into some gang that I didn’t want to be a part of.
But I was one of them. It made me even more depressed. It took me almost six months to be able to even walk into a dialysis center and say hello to another patient.
It truly hurts me even more now that I realize that there are so many people that have zero support. They have to depend on their community and the State to get any type of assistance. A lot of patients miss life-saving treatment because they simply don’t have or can’t afford transportation, and no one wants to bring them. They can’t do dialysis at home because no one is there to assist them, or they’re dealing with PD at home by themselves. They aren’t eating well because no one is there to help them make meals. They’re lonely. And that hurts. I know it does. I’ve been there.
Thank God my husband is here and supports me the way he does because the circle of family members that currently support me is very small. Prior to my husband coming into my life, I had to manage ESRD completely on my own emotionally, mentally, and physically AND raise two children, go to school full-time and work full-time…sometimes along with two part-time jobs. So I understand what it’s like to not have support and still have to get through life. No one ever called and even said, “Hey…how are you feeling?” or “Is there anything I can do for you.” It would have even been comforting if someone just called me to say, “I’m sorry you’re going through this. I love you.” But I didn’t get any of that either. Not from my family. So I get it.
And I already struggled with anxiety, however I was managing it pretty well. I hadn’t had an anxiety attack in a long time. But now I must manage my anxiety. And I mean manage it. First, there was anxiety that I felt in medical situations. It started in the hospital when my kidneys failed. Now every time I had a procedure or surgery done, I had an anxiety attack. I would feel anxiety when I went into the dialysis center. I feel anxiety when I need to see a new doctor. If I notice a new symptom, there's anxiety right along with it. I feel a lot of anxiety every time a new technician has to stick me. And now, anything that causes emotional distress, like conflict or fear, brings anxiety. It seems like everything makes me feel anxiety now. My heart starts racing and I get nauseous. I’ve learned how to stop a full-blown anxiety attack from happening when I can control the environment by using my words. Before I would just become completely immobilized. It’s a lot. And frankly, I’m tired of having to manage anxiety. It’s exhausting, too.
Even though I’m on the transplant list and feel confident that I will eventually get a kidney, it’s likely the anxiety won’t stop. Mostly because I’ve already lost a transplanted kidney once. I didn’t even make it out of the hospital before the kidney had to be removed. Will I lose it again? Will it last long? Will I get cancer and diabetes from the immunosuppressants like my dad did after he got his transplant? Will I still be living when my kids finally have children? Will I be even more sick after the transplant? Will I keep feeling like a burgen to my husband? Will he ever get a break from this? Will my heart give out? Will I still die young? All the unknowns…
It is a lot to manage emotionally and mentally.
It is important for those dealing with ESRD to know that it is likely that the person sitting next to you in the dialysis chair, regardless of their disposition, feels the same way you do. You are not alone and we all understand.
It is also important for caregivers, family, and friends to be empathetic to the feelings that their loved ones living with ESRD are feeling mentally, emotionally, and physically. You may not get it, but you don’t have to get it to be supportive. Just understand that they are there and give them some grace when they’re not being their best selves. Just be there. Love them. Support them the way that you can support them.
It is also important to note the emotional, mental, physical, and financial burden of our caregivers, too. I know for a lot of patients, it’s part of the guilt they feel. No one wants their spouses, children, or grandchildren to feel the burden of their illness. I know I don’t. Especially when you can see their quality of life diminishing right along with yours simply because they choose to support you.
But despite the depression and anxiety, I’m doing great. I have a great circle of friends who not only love me but support me any way they can. They pray for me, call to check on me, and do whatever they can to ensure that I know I am not alone in the fight. They support my husband as well.
I encourage everyone of you with ESRD to talk. To anyone who would listen. Don’t be afraid to get therapy from a professional. Try to keep living as much as possible. I used to love to run. I can’t run anymore right now, but I can walk. I used to go to movies, go on frequent road trips, go to the beach a lot, hang out with my friends after work, and have friends over for dinner all the time. Those things made me feel normal. But I live in another state now, and I don’t have any friends that live close to me anymore. I no longer live within a few hours from the beach. Because of dialysis, it is difficult to go on spontaneous road trips or even the beach when I’d like. I work remotely full-time, so I don’t engage with my coworkers like I used did before.
Fortunately, my husband is my best friend, and we actually like each other and enjoy one another’s company. We do everything together. But it is still so important that as an individual, I find some personal pleasure in life. So I am still trying to figure out how to feel as “normal” as possible and do things to make me happy or feel like I have a good quality of life other than work and go to dialysis. Right now, it’s cooking. Cooking makes me happy. I also used to be an avid reader and I loved to put together puzzles and knit. I can’t seem to get myself to read, and I haven’t bought any puzzles. Maybe it’s time. But now I have this nonprofit, too. And that makes me feel fulfilled and that my struggles with ESRD are not in vain if I can help others. Also, I stay talking to God and I pray a lot.
What makes you happy? What can you do to feel as normal as possible? You may not be able to do all the things you did before, or even the way you used to do it. But don’t let that stop you from living!
Feeling depressed? Open up your mouth. Let someone know. Reach out to your spiritual community. Call your best friend and say, “hey…I’m not okay.” Surround yourself with people that love you. Participate in support groups on Facebook or virtually if you don’t want to or can’t show up in person. There are so many out there now. Take advantage of whatever programs your job or your insurance has to offer. Get therapy. At one point, I got therapy and it was central to my ability to get mentally and emotionally unstuck. Connect with as many people as possible in the kidney community in order to access whatever resources are available. Speak to your social worker at your dialysis center. Trust me…you are NOT alone.
Tell us how you deal with depression.
Available Educational Resources
The National Kidney Foundation has some educational materials available. Download them at https://www.kidney.org/atoz/content/dialysis-depression. Also, Fresenius Kidney Care has some information regarding your emotional health while on dialysis at https://www.freseniuskidneycare.com/thriving-on-dialysis/personal-life.
If you still need help, reach out to us at contact@kidneyresourcenetwork.org. We will try our best to connect you with some local resources…or just be a friend.
References:
Shirazian, S., Grant, C. D., Aina, O., Mattana, J., Khorassani, F., & Ricardo, A. C. (2017). Depression in Chronic Kidney Disease and End-Stage Renal Disease: Similarities and Differences in Diagnosis, Epidemiology, and Management. Kidney International Reports, 2(1), 94-107. https://doi.org/10.1016/j.ekir.2016.09.005
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