022 In Sickness and Health, on Lyme Voice

Sarah and Aaron get together with Cara Gael in this Lyme Voice’s 22nd podcast episode. Cara Gael is an incredible young woman, she has an amazing attitude towards her chronic condition, exceptional for most young persons her age, especially those who continually live a life with chronic illness. She tells her stories and encourage others to tell their stories via her podcast site. Cara Gael is an artist, health advocate, and freelance marketing professional who lived and experience complex chronic illness for a total of 20 baffling years, before she finally found her appropriate diagnosis. Her story is the usual story of most people with chronic illness and that is years and years of struggle within the healthcare system trying to find a diagnosis rightly befitting symptoms, agonizing over many misdiagnoses and losing many constructive opportunities along the way. Her firsthand knowledge of the importance of patient experience, made her want to give the patients the ability to communicate their opinions in conversations about healthcare that customarily rarely take account of the Real Sick People. She’s one of those who has a natural awesome Fight.Heal.Live view in life.

What’s in this episode:

Getting on Disability, Losing Disability

Cara has been finally diagnosed with Ehlers-Danlos Syndrome Hypermobility Type, a year ago. This is a hereditary connective tissue disorder that affects how a person’s body produces collagen. Despite her painful, hypermobile joints that sometimes partially and fully dislocate, widespread soft tissue and nerve pain, chronic daily headaches, and moderate to severe chronic fatigue. And a few other number of secondary conditions that affect her autonomic nervous system, immune system, and heart. She has a very sunny attitude towards life in general and life with chronic illness in particular.

Lyme Disease was the trigger that pointed her and one of the doctors she went to for consultation to what’s really wrong with her, more or less a year ago. Hearing her talk about her illness one would wonder why she’s so vibrant and her suffering all those debilitating symptoms almost every second of her life. She recounts her story in such a fun way that makes her endearing and she can become an awesome inspiration for chronically ill people. Her almost half of her lifetime disability was lost when her illness was finally named. That’s the time when she felt she’s finally won the battle, after she didn’t quit fighting in finding her diagnosis. Her Fight story.

Learning To Function Within A New Normal

As a patient who struggled for 20 years with complex chronic illness before finding her major diagnosis, she had enough experience in her sleeve inspiring her to share in her podcasts about her life of living with chronic illness and disability. She’s doing it partly, “to give others living with illness the opportunity to talk about their experiences.” She’s not claiming that she’s a doctor, and she’s honestly admitting she has no medical training, and she’s categorically placing importance on these and for people to know that. She has a whole page in her website devoted to her narrative of the fact that she’s not a medical professional, and possess only anecdotal experience and painstaking research. She empathically advise everybody to at least consult doctors first for despite the considerable medical knowledge that she’s assimilated along the way, she cannot diagnose, treat, or cure anybody. She’s vividly aware that any illness or sickness can’t be treated by "easy cures” and "quick fixes".

Her day is determined by the degree of how alive or active she feels in the morning. She has her own spoon diagram of Christine Miserandino’s “Spoon Theory” in her website to explain how she allocates her supply of spoon for a day. Each chronic illness sufferer has different kinds of day and chronic life, each can draw their own budgetary diagram of their spoons. Like what Cara has done to make her Live story as easy as she can.

She’s advocating for all patients with chronic illness to not shy away from taking the reins and driving their lives. She knows nobody could help chronic illness patients find their new normal more than they could. When they realize and accept that fact then they can begin their emotional healing, accepting that nothing can prevent you from having some life overruns sometimes. She is inspired by a quote from a song lyric by Guns and Roses of a line from their song November Rain.

 

"Nothing lasts forever, even cold November rain."

Guns & Roses-Cara Gael

 

Resources Mentioned:

Columbia Medical School Workshop

 

Contact Info:

Cara Gael’s email: insicknesspod@gmail.com

Her Twitter: @InSicknessPod

Her Podcast Site: http://www.insicknesspod.com/

Sarah Schlichte Sanchez (Facebook) https://www.facebook.com/sarah.s.sanchez.1

Aaron Sanchez   https://www.facebook.com/aaron.sanchez.9480111?fref=ts