How to Handle the Emotional Challenges of Dialysis

Dialysis takes four hours three times a week. With travel to and from the center, it can take up most of a day. And over half of people report feeling “fatigue” the day after treatment. “If that happens, that’s pretty much your whole week,” says Cukor. “So a lot of people end up not being able to work as much as they would like to or not be able to work at all. That adds more layers of stress on top of all the other things that are going on for them.” 

There are other adjustments too, like changing your diet and closely watching your liquid intake. 

Understandably, about half of people doing dialysis experience “some level of depression or anxiety,” says Cukor. As many as a third have a diagnosis of depression or anxiety. 

“It makes sense,” says Cukor. “It’s a really difficult time to go through.”

Knowing Your Treatment Options

Both Edwards and Conway emphasize the importance of finding out what kinds of dialysis are possible for your particular situation. 

“Ask a lot of questions and push if you find your provider is not recommending the treatment that best aligns with your goals,” says Conway. 

“A lot of times when people are diagnosed and start dialysis in the ER, they quit their job or go on disability and that’s not necessarily the best option,” says Edwards, who left her job at the post office, a decision she now regrets. 

If you are able to do dialysis at home, it may make it easier for you to keep your employment, work part time, or do other things that are important to you. Edwards eventually transitioned to home dialysis and credits it with keeping her healthy while she continues to wait for a transplant. 

Lee says home dialysis was “life-changing because I was in control of my treatments. I felt better, and that gave me some confidence like, I can figure this out.”  

Like Edwards and Lee, you can always ask about other dialysis options later in treatment. “Diagnosis can be a really overwhelming time for patients,” says Cukor. “There's so much information, and it's really hard to figure out what you need to put in place.” If you later decide you would like to try home dialysis, ask your doctor.  

How to Help Yourself

Cukor recommends thinking about what has helped you through hard times in the past. Some ideas:

• Connect with family and friends
• Find support in your faith and through your faith community
• Exercise 
• Journaling
• Get eight hours of sleep nightly
• Follow the recommended diet and eat well

“Peer-to-peer support is the most important piece of navigating this journey,” says Edwards. “No one can talk to a patient like another patient. I wish that when I started out there was someone that I could talk to that had lived that kidney experience who could have guided me and helped me make some better choices for myself.” 

Dialysis centers are starting to introduce the idea of peer mentors, but there are lots of organizations where you can find one right now:

• The American Association of Kidney Patients offers a list of support groups nationwide.
• The National Kidney Foundation has a program called NKF PEERS.
• The Renal Support Network’s HopeLine is a peer support phone hotline.
• The American Kidney Fund’s Community Resource Center can help you find support groups near you.

Keep Busy During Dialysis

“Do something while you're sitting there,” advises Edwards. “Some people knit, others do embroidery, color mandalas, or just read. There are patients who go to school on their laptop while they're sitting in a chair. This is your nice quiet time where you can really engross yourself in something that's important to you.”

When to Get Professional Help

It was only after Lee settled into a routine of dialysis, working, and going to school that she began to develop health anxiety and depression. “When I finally had a moment to breathe, those feelings could come in instead of being in nonstop survival.” 

At the time, says Lee, “there weren't a lot of mental health resources for kidney patients. It wasn't even really talked about at all.” She decided to help herself and others by going to school to become a therapist and now runs an online practice specializing in supporting people with kidney disease. 

“I recommend that people be proactive,” says Cukor, “because it’s easier to head off an episode of depression than dig your way out of it.” He urges patients to be honest when they fill out the depression screening given to them each year. “That’s an opportunity to gauge if your depression is getting to the point where treatment should be initiated,” he says.

It’s definitely time to get help if you:

• Find doing things for yourself is requiring more effort than usual
• Rarely experience positive moods
• Are really short with people and irritable
• Don’t have the energy to do things you want to do
• Notice a big change in your eating or sleeping
• Can't enjoy the things that you used to enjoy

Cukor says to get immediate help if you are having suicidal thoughts or begin to think that life is not worth living anymore. 

What Kind of Help Is Available?

“Psychotherapy and medication are the two cornerstone treatments of depression treatment in the general public and for people with medical illnesses,” says Cukor. “Some people like to talk and enjoy that experience. Some people really don't. If you feel like you don't, then try medication.” Whichever sounds better, Cukor recommends trying it to “see if it lightens the load a bit.”

• Cognitive behavioral therapy is a specific form of therapy focused on helping you change thoughts and behaviors to improve your mood. It can be especially helpful for someone living with chronic kidney disease, says Cukor, because CKD changes your routine and behaviors significantly. CBT therapists work with you to identify thoughts and behaviors that are not helpful, then increase supportive thoughts and behaviors. Together, you can work to maintain parts of your life that bring you happiness and feel rewarding that have nothing to do with your illness. 
• Acceptance and commitment therapy is one of the main approaches Lee takes with her clients. The focus is on figuring out your values — what matters to you — and then taking action on those things you can control. For folks on dialysis, “there is so much that is out of our control,” says Lee. ACT is focused on answering the questions: What do you care about? What kind of life do you want to lead? Because there are still things to live for.
• Antidepressant medication acts directly on your brain to increase the brain chemicals associated with positive mood, which can lessen symptoms of anxiety and depression. “Largely, these medications don’t interact with the other medications prescribed for kidney patients,” says Cukor. “They are not metabolized in the kidney, are not dialyzed out, and, in general, they work.”

Lee also works with her clients to find out if other treatments such as physical therapy, acupuncture, or yoga might help. “I really encourage people to open that door to therapy and get started. Look for a therapist with a background in chronic illness.” 

How to Get Help

“Some nephrologists are enthusiastic about helping people with their mental health problems or might even prescribe antidepressant medications, themselves,” says Cukor. If your nephrologist is receptive and you see them frequently, you can start there or with your primary care doctor. Otherwise, Cukor’s recommendation “is to start with your social worker and tell them what you are going through.”

Looking at the Big Picture

“Finding strategies for finding joy and meaning in this new phase of your life can be really powerful,” says Cukor. What kept Lee going during dialysis “was having other things to look forward to. I was working. I was going to school. I had purpose.” 

Conway and the folks at the AAKP focus on helping people find exactly that. “Do not surrender your goals and aspirations,” says Conway. “You want to live your life and be treated for kidney failure. You don’t want to live your life in service to kidney failure.”