Live the Journey

Leave a CommentIt starts with a Primary Care Physician

Based on the structure of the Healthcare System in the United States, for example, patients experiencing abnormal or unusual symptoms usually start their quest for a diagnosis with their “1st level” primary care physician to initiate various “baseline” diagnostic tests and to hopefully obtain medical advice as to their next move which they hope brings them closer to the correct diagnosis.  But quickly diagnosing even the most common autoimmune illnesses such as *Inflammatory Bowel Disease (“IBD”) (*with Crohn’s Disease being an IBD), Rheumatoid Arthritis, Fibromyalgia, Lupus, Multiple Sclerosis, Psoriasis and Type 1 Diabetes is usually very difficult because they are typically beyond the purview and conventional practice of the primary care physician and thus the path to follow for diagnosis and treatment is as amorphous as Matthew McConaughey’s career trajectory which led to his 2014 Best Actor Oscar.  For these reasons, I have always envisioned such a patient as having to embark upon a “Diagnosis Journey.”

In the event a 1st level general health practitioner is unable to correctly diagnosis a patient but nevertheless suspects a medical problem, they typically refer them to a physician who specializes in the area of the patient’s concern.   This would be a good start to the Patient Diagnosis Journey because such a logical pursuit tends to result in an efficient path toward the correct treatment.  But, sometimes, due to the complex and multifaceted makeup of autoimmune and rare diseases or because the patient resides in a rural community and the local doctor is perceived as an expert on all things medical and is “frequently wrong, but never in doubt,” 1st level primary care physicians misdiagnose the patient or they miss the symptoms altogether.  In either instance, the patient’s symptoms could intensify and further confuse the situation such that valuable time and unnecessary suffering ensues and so begins a possibly very difficult Patient Diagnosis Journey.

Word-of-Mouth Referrals to Specialists fuel the Diagnosis Journey

Since there are approximately 50 MILLION Americans affected by autoimmune diseases (Source: American Autoimmune Related Diseases Association – AARDA) and oftentimes these diseases are not diagnosed by the patient’s internist or primary care physician, these patients are eventually properly diagnosed by initiating a Diagnosis Journey usually beginning with referrals to disease specialists based on word-of-mouth recommendations from friends who have some experience with similar health problems or symptoms.  But just as demonstrated above with the patient’s experience with a primary care physician, inaccurate information can make the Diagnosis Journey longer and more costly.  Therefore, in addition to the possibly painful and lethal symptoms of an undetected autoimmune or rare disease, the patient is saddled with the  added burden of efficiently processing a great deal of information from different sources for the purpose of making an informed decision as to the most prolific Diagnosis Journey.  

Real Life Limitations and the Costs of a Diagnosis Journey

The speed with which a patient gets properly diagnosed with an autoimmune or rare disease primarily depends upon the pervasive or serious nature of the current detectable symptoms.  Unless they are debilitating, these symptoms logically affect the patient’s determination and motivation to seek proper treatment.  But access to appropriate specialty physicians, a patient’s financial means and having the available time to initiate the pursuit of a diagnosis are also determinative of the difficulty, duration and “cost” of the Patient Diagnosis Journey.  Moreover, the “cost” of the Patient Diagnosis Journey isn’t only financial as overwhelming feelings of frustration, loneliness and hopelessness can easily be triggered after being doubted and rejected by educated health care professionals who due to a lack of scientific evidence or medical precedent conclude “it’s all in your mind.” The effect of doctors doubting or rejecting legitimate Diagnosis Journey patient symptoms as indicative of an autoimmune or rare disease can also influence the most supportive of close friends and loving family members. The resulting feelings of frustration, loneliness and hopelessness could have severe and possibly long-term psychological effects such as depression and anxiety, each of which can become primary medical problems in addition to the underlying autoimmune or rare disease.  

Significance of the “Journey”

In my next Blog Post I’m sharing my 1984/1985 Diagnosis Journey which led me to Crohn’s Disease so that people facing similar doubters as the ones I encountered will better understand how the “Journey” is just as important as the “Destination” [or “Diagnosis”] when seeking a correct diagnosis and treatment for an illness whose palpable and often debilitating symptoms no one seems to acknowledge except them.  While my Diagnosis Journey lasted only 1-2 years, it involved so many twists and turns and bizarre recurring painful symptoms that I spent much of the time curled up in the fetal position on bathroom floors trying to fend off the fright of abdominal cramps which were as intense as labor pains. 

Mine was a demeaning and embarrassing experience yet with the support of others I learned a great deal about myself and developed the discipline to always remain focused on the “Journey” because I was repeatedly made to believe by seemingly credible health care professionals that there may never be a “Destination” and I just couldn’t, and wouldn’t, accept that. 

The confidence I developed in listening to my body during that grueling Diagnosis Journey has served me well both in life and in dealing with what has unfortunately turned out to be a 30-year case of Severe Crohn’s Disease.  Had I never obtained a diagnosis or reached my “Destination,” at least I would have known I did all I could to help myself.  Ironically, that determination, confidence and self-reliance are the patient “tools” I most rely upon when my Crohn’s Disease tests my resolve and will to live. 

Sadly, failing to obtain a diagnosis is a realistic outcome of a Diagnosis Journey because sometimes the most discernible and unbearable patient symptoms fail to warrant a formal diagnosis as not every group of symptoms is classified as a disease or the diagnosis for a certain combination of symptoms is so rare that it becomes elusive and then meaningless since no significant research is performed to help develop effective treatments.  This is all the more reason to ALWAYS focus on the Journey of a Diagnosis Journey and not on its Destination, i.e., a formal Diagnosis, because the life lessons of the Journey could provide the strength and knowledge required to live a happy and fulfilling life despite such challenging symptoms, whether diagnosed or not.     

***If you have an interesting, instructive or inspirational Diagnosis Journey story, PLEASE leave a Comment and share it so others can benefit from itThe more we share these “Diagnosis Journey” stories the easier it will be for others to pursue answers and treatments for their ailments.