Lived Through the Skin: Dialysis, Dignity, and the Dermatologic Burden of Kidney Disease

Macie Garner

Ross Academic Research Society, Ross University School of Medicine

During a visit to a dialysis facility, I asked a patient what he wished people who had never experienced dialysis understood. His answer was not about the machine. It was about being believed. He wanted people to know that patients’ complaints are genuine. He wanted them to understand that dialysis can take away independence and dignity, and that help, when offered without listening, can sometimes feel less like support and more like another reminder of what has been lost.

This conversation changed the way I thought about kidney disease. In medical education, dialysis is often introduced through physiology: filtration, solute clearance, fluid balance, vascular access, and survival. For patients, dialysis is not only a renal replacement therapy. It is a life reorganized around treatment. It is time surrendered several days a week. It is fatigue, dependence, transportation, dietary restrictions, medication burden, and the constant awareness that the body must be protected. It is also, in a very literal way, lived through the skin.

Chronic kidney disease and end-stage kidney disease are associated with multiple dermatologic manifestations, including pruritus, xerosis, pigmentary changes, hair and nail changes, acquired perforating disorders, calciphylaxis, access-site infections, and other cutaneous findings. (1,2) These manifestations are not just cosmetic or incidental. Dermatologic disease in patients with kidney disease can be difficult to diagnose and treat, and prompt recognition is important for management and complication prevention. (1) Just as important, these skin-related symptoms can shape how patients sleep, dress, move, socialize, protect themselves, and understand their bodies. For patients, these manifestations may not feel secondary to kidney disease; they may be the way kidney disease is encountered most personally.

This is where dermatology and quality of life meet. Skin disease does not only happen on the body; it happens to the person. It can alter identity, behavior, confidence, and independence. For patients receiving dialysis, the skin may become a site of discomfort, visibility, vulnerability, and vigilance. Itching can interrupt sleep. Dryness may crack. Swelling may change how the body feels and appears. Scars may mark treatment. A vascular access site may become both a lifeline and a vulnerable point of entry that must be protected. In this way, the skin becomes more than a surface. It becomes the boundary between treatment and infection, independence and dependence, ordinary life and constant caution.

One patient described the daily burden of protecting his dialysis access. In hemodialysis, vascular access allows blood to move between the body and the dialysis machine. (3) The Centers for Disease Control and Prevention notes that infections are common among people receiving dialysis and can be serious, and patients are encouraged to monitor their access site daily for signs of infection or contamination. (3) Patient-facing infection prevention resources also emphasize hygiene, handwashing, keeping the area clean and dry, protecting the access site during bathing, and avoiding high-risk water exposures. (4)

For someone outside the experience, these instructions may sound like a checklist. For a patient, they can become a way of living. In a tropical climate, where heat, sweating, humidity, bathing, and the ocean are part of daily life, access-site protection can shape behavior in especially visible ways. A patient may live near the water yet no longer feel free to enter it. Bathing may require caution, and heat may raise concern about sweat, irritation, or infection. Recreation may become risk assessment. The access site is not simply a medical detail; it is a skin-level lifeline around which daily life must be organized.

This constant guarding is one of the quietest forms of adaptation. Patients may stop doing things they once enjoyed. They may change how they bathe, dress, sleep, travel, or accept help. They may become vigilant about signs of infection while trying not to seem burdensome. They may conceal discomfort because they do not want to be seen as complaining. The adaptations can be medically necessary, but they are also emotionally costly. They ask patients to reshape their lives around vulnerabilities that others may never notice.

Chronic kidney disease-associated pruritus offers another example of how a skin symptom can become a quality-of-life issue. A systematic review found that CKD-associated pruritus can significantly affect patients’ daily activities and quality of life. (5) Itching is easy to minimize from the outside because it does not always appear medically urgent. Yet for the person experiencing it, chronic itch can be exhausting. It can disturb sleep, increase irritability, affect concentration, and make the body feel like a place of constant discomfort. When symptoms are invisible, underestimated, or repeatedly dismissed, patients may learn to endure them quietly. They may scratch in private, cover their skin, or stop mentioning symptoms because they feel dismissed.

The theme of dignity returned throughout the conversations I had. One patient explained that the best thing for someone on dialysis is a strong support system, yet support must preserve agency. There is a difference between helping someone and taking over; between recognizing a person’s limitations and reducing that person to them. Patients may need assistance, but they also need to remain authors of their own lives. When help is offered without listening, it can unintentionally deepen the loss of independence that dialysis has already imposed.

This is especially important because hemodialysis affects not only physical health, but also social and psychological well-being. A qualitative study examining quality of life in hemodialysis patients from family caregivers’ perspectives identified mental and psychological problems, social disruption, and physical problems as major themes. (6) These categories reflect what patients and families often already know: dialysis is not confined to the hours spent connected to a machine. It follows patients home. It changes relationships. It alters roles within families. It affects how a person works, travels, participates, rests, and asks for help.

Another patient reflected on the years before dialysis, when he lived with uncontrolled hypertension and diabetes. He remembered being warned that he needed to get them under control, but looking back, he wished the warning had been made more concrete. He wished someone had explained what dialysis could mean in daily life: treatment several days a week, hours at a time, with life arranged around fatigue, transportation, access-site protection, infection risk, dependence, and bodily vigilance. His reflection exposed a gap in preventive counseling. Patients may hear that uncontrolled disease is dangerous without fully understanding what that danger may feel like in ordinary routines.

This does not mean physicians should use fear or shame as tools. Patients with hypertension, diabetes, and kidney disease do not need to be blamed into adherence, but they do deserve honest, concrete, compassionate communication. Saying “you need to control this” may be medically accurate, but it can remain abstract. Explaining how uncontrolled disease could affect work, family life, bathing, travel, skin integrity, independence, and dignity may make prevention feel more concrete. The goal is not to frighten patients, but to help them understand what is at stake while there is still time to act.

These conversations taught me that the skin can carry the burden of chronic illness in ways that are visible, practical, and deeply personal. In dialysis, the skin is where access is created, where infection can enter, where itching and dryness are felt, where scars remain, and where patients experience both exposure and concealment. It shapes behavior not only through pain, but through caution. It shapes identity not only through appearance, but through dependence. It shapes quality of life not only through symptoms, but through the quiet adjustments patients make to keep themselves safe.

For all of us, the lesson is simple but demanding: believe patients when they describe what illness costs them. Listen when they say their concerns are genuine. Recognize that dignity is not a luxury added after survival; it is part of care. Dialysis may replace part of kidney function, but it cannot restore all the independence, spontaneity, or bodily freedom patients may lose. To care well for patients with chronic disease, we must understand not only what treatment does for the body, but also what illness asks patients to protect, conceal, surrender, and silently adapt to every day.

References

1. Singal A, Liu J, Cowper SE, Ko CJ, Kroshinsky D, Lipner HI, Robinson-Bostom L, Yosipovitch G, Lipner SR. Part I. Dermatologic manifestations in patients with kidney disease. J Am Acad Dermatol. Published online June 19, 2025. doi:10.1016/j.jaad.2025.06.035.

2. Arriaga Escamilla D, Lakhani A, Antony S, Salazar Villegas KN, Gupta M, Ramnath P, Murillo Pineda MI, Bedor A, Banegas D, Calderon Martinez E. Dermatological manifestations in patients with chronic kidney disease: a review. Cureus. 2024;16(1). doi:10.7759/cureus.52253.

3. Centers for Disease Control and Prevention. Infections and patients on dialysis. CDC. Updated March 26, 2024. Accessed June 6, 2026. https://www.cdc.gov/dialysis-safety/about/index.html.

4. Agarwal A. Preventing infections in hemodialysis. Dialysis Patient Citizens Education Center. Published 2025. Accessed June 6, 2026. https://www.dpcedcenter.org/wp-content/uploads/2025/05/Preventing-Infections-in-Hemodialysis.pdf.

5. Wang T, Goh JX, Seth S, Le Do L, Tesfaye W, Sud K, Van C, Small F, Tarafdar S, Castelino RL. Chronic kidney disease-associated pruritus and patient-centred outcomes: a systematic review. J Nephrol. 2025;38(2):371-391. doi:10.1007/s40620-025-02221-9.

6. Hejazi SS, Hosseini M, Ebadi A, Alavi Majd H. Components of quality of life in hemodialysis patients from family caregivers’ perspective: a qualitative study. BMC Nephrol. 2021;22(1):379. doi:10.1186/s12882-021-02584-8.