A recent study in the Clinical Journal of the American Society of Nephrology revealed the emotional toll of patients who suffer from chronic kidney disease. Aside from the pain caused by the disease itself, patients feel isolation, mistrustful, alienated and even abandoned when their needs are at their greatest. This is consistent with other findings of patients suffering from other chronic illnesses, not just chronic kidney disease.
The psychological side effects are many, aside from the above mentioned. Patients in other studies have reported guilt from being a seemingly negative effect of those around them because of their illness. There is a constant swing of emotions from acceptance, depression and anger. Anxiety is another unseen agony and the fear of what the future may hold. Many patients go into a kind-of mourning period over their past selves’ period as illnesses like chronic kidney disease require massive lifestyle changes and the loss of capabilities and freedoms patients once had. They also report feeling anger and resentment toward healthier people as they believe those people can never truly understand the patient’s personal agony.
Experts on chronic illness in general report when a patient is diagnosed with an illness such as chronic kidney disease it is normal for a patient to experience turbulent emotions. Distress is a common one and can be made worse if the person has a history of depression in their life or are going through stressful times as is. They also say the above mentioned grief and shame is very normal too.
In the case of the aforementioned study, 27 patients in late stage chronic kidney disease were interviewed and three major themes were revealed:
- They felt mistrust, abandonment, isolation and/or alienation when their care providers seemed to lack insight as to what they were going through
- They also felt the above mentioned feelings in relation to how their care was set up
- Patients had a hard time understanding what was actually happening to them and blamed themselves for what was happening
The study made several important recommendations to those suffering from chronic kidney disease. These included improving the education of the patient and building better communication between patients and providers. They noted, however, there is a need to understand how patients are interacting with providers and health care and how this effects them. Researchers said this is needed due to the fragmented and complex nature of the health care system.
In the meantime, there are methods a patient can use to cope with a diagnosis such as chronic kidney disease.
- Confronting the diagnosis. Don’t deny it is there, which is another psychological effect diseases like chronic kidney disease can have. Write down all of the questions you have for your physician and ask them. The knowledge can have an empowering effect and give a better feeling of mastery
- Seek social support. Let go of unnecessary obligations. When in need, ask for more help from family and friends. It is very important to build a strong social network in which you can rely on and talk with about your situation
- Have an active coping plan. Develop an action plan which will give some control over what you can control.
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