Published on May 24, 2022 | May is Mental Health Awareness Month. With chronic illnesses, like ARPKD and ADPKD, mental health is an important factor of your overall care plan. Whether you’re a patient with PKD, caregiver, or family member, taking charge of your mental health is empowering. To set you up with the right tools, we sat down with Stephanie Donahue, N.P., and Daniel Cukor, Ph.D of the The Rogosin Institute in New York City.
Identifying Mental Health Tools and Resources for PKD Patients
It’s always important to have a care team you can partner with and truly trust. Put yourself in the care of a knowledgeable team of healthcare providers, including mental health providers, dietitians, and complementary health practitioners (when necessary) who understand that this is about more than just your kidneys. Along with finding the right team, make sure you and your care team are on the same page. That’s an essential component of feeling your best about your treatment options and choices.
Polycystic kidney disease is a complex illness and many people use different treatment strategies at different points in their journey. Make sure to have the facts about your specific situation. With unknown things, it’s so easy for our minds to get stuck on the “what ifs” that may never come. Be prepared to live with the reality of your disease not that of other people you know with PKD. Instead of focusing on what might happen, focus on keeping yourself healthy and hopeful. Get some fresh air and sunshine (while being sun smart), stay active, socialize with people you care about, eat healthy, take your medicines as prescribed, keep your medical appointments, and follow the suggestions of your healthcare team.
To look to the future, stay current on ongoing research opportunities that interest you, They may help advance our knowledge of PKD and maybe even lead to better treatments.
Mental Health Signs and Symptoms to Keep an Eye On
So, how do you recognize that you need to address your mental health? What are the signs and symptoms? Ms. Donahue and Dr. Cukor recommend this checklist to assess your mental health.
- Do you notice you don’t socialize as much, you sleep more, you’re less interested in the world around you and more isolated?
- Do you find your mood is lower than normal or that you are more frequently short or irritable?
- Are you less interested in food and losing weight?
- Do you find yourself gaining weight?
- Are you turning more and more to alcohol or other substances, especially in an effort to feel better?
- Has someone around you told you they notice you aren’t acting like yourself?
If you’re experiencing these symptoms, talk to your healthcare team.
Staying Positive With a Chronic Illness
While life with a chronic illness like PKD can be frustrating, it’s important to stay positive. Every day is an opportunity to change something that might make you healthier and more hopeful. Although it can be something small, over time that will lead to big changes for the better. Focus on the present, think about what you can do today to feel your best, physically and emotionally. Getting too far into thoughts about the future can lead us to jump to conclusions about how things will turn out. If we maximize every day, then we can feel confident that we have done everything in our ability to maximize our health.
Although, while others may have your same disease, which can feel supportive at times, it can also sometimes feel frightening when we identify too much with what they’re going through. Just because they experience something doesn’t mean you necessarily will. Everyone is on their own PKD journey.
When you’re feeling overwhelmed or unhappy, Dr. Cukor offers some advice. “If you’re overwhelmed, be proactive! Talk to your healthcare team, your friends, family, a professional—anyone or everyone. Don’t allow the negative emotions to build, tackle the issues head-on and early-on.” Stay connected to people you care about and the world around you.
Managing Kidney Failure and Your Emotions
While in kidney failure, it’s normal to experience stress or anxiety. Remember, you’re not alone. If you’re open to it, there are several resources to support you on your journey.
“Make sure your information is accurate and take it one day at a time. Sometimes one step, one appointment at a time,” said Ms. Donahue. “Remember that your healthcare team will give you good information on which to base your decisions. You’ll decide what is best for you, and the healthier you are, mind and body, the more you’ll trust those decisions and feel good about them.”
People have different styles of how they respond to a distressing diagnosis. Some people seek as much information as possible and others prefer to avoid thinking about their situation. Research has shown that the more actively one is engaged in their healthcare, the better their outcomes will be. So, take some time to adjust to the shock of the diagnosis, but don’t allow yourself to fall out of touch with your healthcare team, or not follow their recommendations.
For people approaching dialysis, they sometimes feel that this represents a failure of all of their efforts to try and prevent disease progression. We have to accept that sometimes the course of our illness (and our lives in general) are beyond our direct control. We need to continue maximizing our health and taking advantage of all the world has to offer—whether we require renal replacement therapies or not.
To find more resources, check out our resource library. If you ever have questions or need someone to talk to, our HOPE Line is always here for you.
Although I appreciate this article, with all due respect, it feels astonishingly simplistic. If you answered “yes” to the depression symptoms and you have to work, have children with their own issues and an unavailable spouse, accomplishing these suggestions is going to be close to impossible.
Also, whenever I try to discuss my mental health issues with my transplant team, I’m asked if I’m “really ready for a transplant?” I am also put in the middle of disagreements between doctors regarding my care, which is a headache I don’t need.
The overlapping space that is comprised of mental health issues and chronic kidney disease doesn’t feel like one many have sought to address.
I even wrote Dr. Cukor with these issues, only to get back encouragement to work with my transplant team. Perhaps he’s unaware, but transplant teams can also act like gatekeepers, making it extremely unsafe to address these issues with them. I was hoping he might suggest I apply to his transplant center, but no such luck.
Please know that I am not just an angry patient. I am a psychotherapist for over 22 years who has a psychiatrist and psychologist, nephrologist, and transplant team—considered one of the best in the country, but I still can’t get help stabilizing my psychotropic meds unless I do all of the research myself with my psychiatrist giving her stamp of approval.
Please forgive my desperate tone. I am exhausted, confused, and would really like to know how I can get help with this.
Thank you so much for listening.
Most Sincerely,
Margot