It is not always easy in the society we live in to prioritize taking care of yourself, especially for Chronic Kidney Disease and Dialysis patients. How many times have you been told that you do not look sick, or that Dialysis must be going well? What's more, family and friends may cause you to feel guilty for canceling plans at the last minute because you are not feeling well - telling you to "suck it up." Others may go as far as accusing you of faking or being overly dramatic about your health symptoms. Well, you are not alone. The Chronic Kidney Disease Community must stand together to stop the "health shaming" which happens every day to Chronic Kidney Disease, Dialysis, Kidney Transplant, Diabetes, and High Blood Pressure patients.
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The Chronic Kidney Disease Community was in an uproar when reading the comments of a 43-year-old Dialysis Nurse, Pamela Dougherty who suggested that Dialysis patients have a "sense of entitlement" and do not want to work. "Too little is asked of patients," said Dougherty. While her inaccurate comments were harsh and misplaced, statements from loved ones who do not understand how challenging Chronic Kidney Disease/Dialysis is may unknowingly express hurtful comments which allude to laziness, inconsistency, unreliability, disappointment, and failure. They do not understand that a Chronic Illness such as Chronic Kidney Disease is challenging and causes exhaustion, Anemia (low red blood cell count), nausea, cramping, pain, mental fogginess, demoralization, depression, frustration, and anxiety.
Chronically ill, Kaitlyn Tincher said, "I spend every waking moment fighting against the raging wars inside my body. Every morning when I wake up, I want to go back to bed. (Even when I haven’t left it yet.) I want to go back to sleep, dreaming of waking up healthy. I don’t want to wake up into sickness. That’s a nightmare. I’m supposed to wake up from nightmares, not into them." Another chronically ill patient, Kassy Scarcia said, "So often I have friends and colleagues lecturing me about how I don't go out enough, calling me a bad friend for bailing when I am in pain or telling me to stop acting like an old lady and suck it up." We at KidneyBuzz.com have an important request for family members, friends, employers, and even uninformed Healthcare Professionals: Please stop "health shaming" Chronic Kidney Disease (Stages 1 to 5) including Dialysis patients.
Just because patients may not look like they are on the brink of death does not mean that they do not feel that way at times. Next time you are feeling ill and it appears that someone does not quite understand, tell them to imagine the last time they were sick or in serious pain. Ask them how they felt and what they did about it: Call off work, and cancel any plans and activities? Did they lay low, rest and take it easy? Now ask them to imagine that they felt that way regularly and there was nothing they could do to bounce back from their sickness immediately.
This exercise may help healthier individuals better understand your circumstances. They will likely think, "That’s no way to live life," and "You can’t be that sick or that miserable all of the time." If they ask how they can help, let them know how they can best assist you. If you are in need of a kidney transplant, that may be a great opportunity to share the process of donation.
The fact is that no Chronic Kidney Disease or Dialysis patient asked to be sick, and all patients wish they could be healthier. However, until that is possible with a Kidney Transplant or an Artificial Kidney option, patients must constantly fight against the pressure to act "normal" and keep going at any cost. This can lead to health complications, hospitalization, fainting, depression and worse. While it is not always easy, patients must learn the limits of their bodies and take good care of their health. Also, Chronic Kidney Disease and Dialysis patients should try to surround themselves with individuals who are kind, caring and understanding. Patients may be surprised how much stress and anxiety these strategies may relieve.
Share this article with at least one other person so that we can fight against "health shaming" in the Chronic Kidney Disease Community. Have you ever been "health shamed?" What do you think about comments like Nurse Pamela Dougherty's? Your opinion matters. Share your answers with the over 35,000 friends at the KidneyBuzz.com Facebook Fan Page (click here). Like the page while you are there. Visit KidneyBuzz.com daily (along with the other 115,000+ individuals who visit monthly) for breaking news and information which teaches those with Chronic Kidney Disease, Dialysis, Kidney Transplant, Diabetes, and High Blood Pressure how to better manage and improve their lives.