You have been recently diagnosed with chronic kidney disease and all of sudden your perfect life, or near perfect life, comes to a standstill. With the physician mentioning that you might need to start dialysis in a few weeks or months, you are suddenly feeling rudderless.

With the onset and discovery of any major disease, such as chronic kidney disease, it becomes difficult for you and your family, during this emotionally turbulent period, to comprehend so much information. The definition of normality changes and simple chores become uphill tasks. It’s easy to become overwhelmed in trying to adjust to this new life. Though the healthcare professionals can help you in providing physical comfort, sometimes your emotional needs can end up taking a back seat. Even the wisest person can struggle to find right words when it comes to providing empathy.

“In an ideal world, when we are faced with a new health problem, a clinician is available to sit down and address all our questions and anxieties about the condition and its treatment. This ideal is rarely met in the United States health system. More typically, we’re rushed through doctor visits that fly by too quickly for us to gather our thoughts.”

NY Times article

Technology, which may have helped in discovering the problem at a much earlier stage, may also complicate the patient-physician connection. As physicians spend more and more time looking at their computer screens, patients may feel reduced to a case number only.

There is no right or wrong way to cope with a chronic illness. Some patients may find comfort in taking some alone time to process the information while others may want to look for some support from others. A patient support group can provide much needed solace during those difficult times.

Benefits of Support Groups

  • Talking to someone who has already been in your shoes can help you in adjusting to your new life.
  • Sharing your experiences with someone who has already been through this is a powerful support.
  • It provides a lot of hope hearing and knowing that someone else has struggled with the same issues and now is doing better.
  • It helps in better understanding how to cope with the current situation and perhaps begin to find hope again.

Although life may never go back to the way it used to be, peer support can definitely guide you to accept the “New” normal and realize there is a future ahead of you.  At the support groups, you can find the atmosphere to share your innermost thoughts, feelings and fears, which you may want to hide from the outside world, which may not understand.  

Finding this help also provides support for  the caregivers in your life, who realize they are not alone with having to be there for you. And what’s more, even the caregivers can join their own support groups, where they can learn how to provide help while maintaining their own physical and mental health.

Reach of support groups

With the advancement of technology, a physical visit is not a necessity. The conversations can take place over the telephone, video conferencing or through online forums such as Kidney connect, which provides wonderful support to the patients and their caregivers. Some of the forums may also have voluntary involvement of a medical professional, thus providing a clarification of medical issues and terminology along with providing emotional support. You can check with your health care professional for suggestions of any such support group in your vicinity. The support groups can be for general chronic conditions or related to a specific disease

One caveat, like any other social media platform, these support forums are also not immune to the challenges of invasion of privacy or of providing wrong or misleading information. Nevertheless the overall structure of these forums is to provide a safe platform for patients who may find all the new information too overwhelming or anxiety provoking. Though joining a support group does not help you in treating your medical condition, and should also not be substituted for medical advice, you can always be on the lookout for a counselor or a social worker to help you find a peer group to deal with the emotional aspects of your illness.

Image by Gerd Altmann from Pixabay