Sunday, January 31, 2016

Camaraderie of Chronic Illness

For those of us with a rare disease or other chronic illness, it doesn't take much to relate to one another regardless of the diagnosis. Our commonalities create an instant bond, an instant understanding of another's life with chronic illness. We don't need the same diagnosis or even the same symptoms or experiences. We experience enough and know enough to have an idea of what life is like with that condition.


We Share a Medical Life

  • We share many of the same symptoms across conditions.
               It isn't uncommon for us experience the same generic symptoms that sweep across the board of conditions. We often simply feel sick - that blah icky feeling that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. Within subgroups of conditions, we share even more common ailments. Those within the GI condition group experience some type of stomach upset whether it's nausea, pain, or bowel issues. We have additional uncommon symptoms but we have a primary source of shared symptoms with different causes. But no matter what - we can relate.

  • We share the balancing act between the medical and our daily life
              Our days are occupied with  an abundance of medications, medical appointments, and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday life. We understand choosing between one activity over another because our body may not let us complete both choices.

  • We share the struggle of disclosure
              Disclosure can be a tricky subject. Knowing what and when to share with the various groups of individuals in our lives isn't always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.


We Share a Personality

  • We share important life lessons and virtues
               We know what it means to persevere, to have inner strength and determination. We've learned what it takes to survive and to survive on a daily basis. It takes real strength to not give up; to keep chasing our dreams and to make the most out of life. It's hard business keeping up with life when you're sick yet we manage to everyday.

  • We share a deep appreciation for life and achievements
               We've learned not to take life for granted. We've all lost many loved ones with similar health issues. Repeated losses teach us to cherish everyday, especially the good days. And on those good days we're extremely proud of our accomplishments. It isn't always easy to achieve your goals when you're dealing with a chronic illness. We appreciate how far we've come in life in the midst of health issues and make the best out of each day that we can.

  • We share with one another and support one another
               No one knows as well as another chronically ill person the difficulty that one faces on a daily basis. We share our stories with one another and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.

3 comments:

  1. That was the best part about the Youth Rally: what exactly your diagnosis was didn't matter, it was enough to know we all understood each other's experiences, and that's where our bonds came from

    ReplyDelete
  2. That was the best part about the Youth Rally: what exactly your diagnosis was didn't matter, it was enough to know we all understood each other's experiences, and that's where our bonds came from

    ReplyDelete