Mirror, Mirror

Body image, self-esteem, and chronic kidney disease

This year, The Kidney Foundation held three webinars on the topic of body image, self-esteem and chronic kidney disease. Renal Social Worker, Jose Medeiros moderated one of the sessions on men’s health. After the event, he sat down with us for a Q&A to discuss ways to break down barriers and encourage conversation about body image and self-esteem. You can access the webinar recordings on demand at kidney.ca/webinars.

Why does body image matter?

Body image matters because it is connected to an individual’s self-perception and self-esteem. If a person has a negative view of themselves and their body, it means that potentially all aspects of their life can be negatively affected. A positive body image and self-esteem is critical to maintaining a person’s physical, psychological, emotional, sexual, social, physical and spiritual health.

What do CKD patients face differently than others?

I would say that different chronic diseases can impact individuals in similar ways, in terms of weight, appetite and energy fluctuations, diet restrictions, as well as visible body changes due to surgical scars. Specifically, CKD patients must cope with body changes pre-dialysis, on dialysis and post-transplant. During pre-dialysis, they deal with uremic symptoms (changes in how they produce urine) that can result in changes to their skin colour/texture, weight gain/loss, and a metallic taste/breath smell like ammonia. On dialysis, some of these symptoms do improve, although weight and appetite can continue to fluctuate. Following a renal diet is an ongoing challenge that patients need support with throughout each phase of care. In addition, hemodialysis patients

iStockphoto.com/AndreyPopov

by Jose Medeiros, edited by Erika Muscat

must adjust to body changes resulting from the creation of vascular access (a fistula, graft or a temporary central venous catheter (CVC line) to start hemodialysis). CVC lines are clearly visible on a person’s neck and require special care to prevent infection. A fistula is easier to care for, but in terms of body image, it can lead to a person feeling self-conscious. The fistula can appear bumpy or enlarged. Transplant recipients may experience side effects related to anti-rejection medications, such as “a moon face” or appetite and weight gain due to medications, such as prednisone.

Are there different concerns that men and women face and if so, what are they?

The body image concerns are more similar than they are different, although there can be gender-based differences. In addition to those changes already mentioned, kidney failure can also affect sexual desire and performance for both men and women. Chronic kidney disease and its treatments can also have an impact on the menstrual cycle of women. Menstruation can become irregular for some, or even stop altogether for others. Women of child-bearing age need support addressing their family planning goals and making an informed decision about having children or not. Both genders can experience unwanted hair growth due to medications posttransplant.

What is the most common body image-related worry you hear from patients, and what type of support or resources do you direct them to?

It tends to depend on the patient’s age, relationship status, treatment choices, health status and other chronic health problems. I find that younger single patients, or patients who are in relatively new romantic relationships, or are separated/divorced and interested in dating, seem to focus on physical appearance issues, or on their fear of rejection due to weight gain/loss. They may also have concerns about how others will react to their PD (Peritoneal Dialysis) catheter, bumpy fistula or CVC line.

Older patients are also concerned about these issues, but they seem to focus more on appetite and energy fluctuations. The middle-aged and older adults on dialysis often express that they may physically and functionally appear older than their peers, suddenly requiring mobility aids to get around, or become less able to go out into the community alone. Some may need assistance with personal care or day-to-day support. I am thrilled that The Kidney Foundation is producing the body image and self-esteem webinars for men and women. I hope these types of webinars continue to be held going forward at regular intervals and that new ones are developed targeting specific age groups with unique needs.

What can people do to help themselves cope?

It is common for people living with a chronic illness to initially withdraw from their family, friends or spouses/ partners when they start experiencing body image issues related to chronic kidney disease. It is important for patients to give themselves permission to grieve their real or perceived losses. It is hard to move forward without first emotionally and spiritually acknowledging what is happening to you and the ripple effect that CKD is having on a person’s life. It is equally important to also give yourself permission to reach out and ask for assistance/support in dealing with body image issues. I strongly recommend The Kidney Foundation webinars on this issue and its Peer Support program. Connecting with someone who has a shared lived experience and understands what you are going through can be very helpful. I encourage patients to consider individual/couples counselling if they have the means. Their care team can assist them in searching online for appropriate counselling services with a sliding scale for payment. Moreover, if a patient has a family physician, I suggest that the patient consult them about it and request a psychiatric referral, as lack of body positivity can have a negative impact on mood.

As a caregiver/friend/family member, what should you say/ not say to loved ones who are struggling with their body image because of their kidney disease?

It is not productive to comment on a person’s obvious weight gain/loss. This issue is already raised every time the person attends kidney clinic appointments or dialysis. It is more helpful to wait for the person to comment on their concerns. It is helpful to ask open ended, non-judgmental questions, such as, “do you think talking to your dietitian might help? If you want, I would be happy to be present to support you.” It is not easy, but active listening and simply being emotionally present is very important to patients; it enables them to feel safe and comfortable sharing their concerns with friends, family and professionals alike.

As a caregiver/friend/family member, what can you do to help a loved one cope with their kidney disease and the issues they face?

Patients often comment on how much they appreciate a ride to a clinic/dialysis and to have a support person attend clinics with them to act as a sounding board afterwards. The support person can also help to raise issues that the patient wanted to address but forgot or find difficult to ask. Having a support person attend a clinic is helpful for patients to feel that their family member and close friends understand what is going on without having to explain how their chronic disease is progressing.