Nothing’s Wrong with You- Failure of Healthcare with Auto-Immune Disorders

I have worked my entire adult life in healthcare, first as an X-ray tech and then as an Occupational Therapist. In that time I’ve been privy to the interactions between thousands of patients and their doctors. Of course during that time I have had my own interactions with doctors as well. Through all of those doctor-patient encounters, an ugly truth emerged: If doctors don’t know what’s wrong with you, then too often they conclude nothing is wrong with you.

If you think I am jaded, bitter or cynical, just do a little homework. Go to the internet and search for forums or message boards for people with most any auto-immune disorders or connective tissue disorders.

Connective tissue is known as our “cellular glue” that provides structure and support for the body tissues, including organs. Connective tissue disorders are sometimes genetic. Sometimes the cause is unknown. Connective tissue disorders include Scleroderma, Sjögren's syndrome, Rheumatoid arthritis, lupus, Marfan syndrome, Ehlers-Danlos syndrome, and Osteogenesis imperfecta.

The immune system protects the body from infection and disease. In auto-immune disorders, the normal immune response goes awry and the body attacks itself. Auto-immune disorders can affect the whole body, or can be more localized. Auto-immune disorders tend to run in families. The prevalence is higher in women, particularly Hispanic, African American and Native American women.

Localized Auto-immune disorders include Multiple Sclerosis, Type 1 Diabetes, Hashimoto’s thyroiditis, Crohn’s disease, ulcerative colitis, celiac disease, and Addison’s disease. Many experts believe many cancers to be auto-immune in nature.

Systemic auto-immune disorders include lupus, scleroderma, Sjögren's Syndrome, rheumatoid arthritis, and Guillain-Barre Syndrome. All of these except Guillian-Barre are considered to be both connective tissue disorders and auto-immune disorders. Many experts consider Fibromyalgia to be a connective tissue, auto-immune disorder.

Many of these connective tissue and auto-immune disorders have many things in common symptomatically. The other thing most of them have in common is that they are difficult to diagnose. There are no specific, definitive tests for many of these disorders, and they are diagnosed by exclusion, meaning ruling out the most likely other diagnoses, also known as differential diagnoses. When there are no definitive tests, the history and patient report of symptoms is even more crucial in diagnosis. Herein lies the snafu. Patients who are ultimately diagnosed with these disorders report what often turns out to be years of reporting symptoms that are essentially dismissed by doctors. Multiple Sclerosis for example sometimes takes 10 or more years to diagnose. To make matters worse, it is not unusual at all for a person diagnosed with an auto-immune disorder to subsequently be diagnosed with multiple auto-immune disorders.

Patients diagnosed with auto-immune and connective tissue disorders overwhelmingly report their frustration with doctors’ attitudes. Many have seen countless physicians, only to be referred to derogatorily in their record as “doctor shopping”. Worse, they have multiple mentions in their medical records of being “symptom magnifiers” and having “multiple psychiatric issues”. Yes, sad but true, when doctors don’t know what’s wrong with you, they deduce nothing is physically wrong with you, and therefore it is psychological.

Many patients with auto-immune and connective tissue disorders have shared their stories with me of their frustration in their journey to diagnosis. I have also shared in frustration with many patients yet to be diagnosed. Patients whose stories, in my experience point to the likelihood of an auto-immune and/or connective tissue disorder. In part I say this because I have ruled out common and not so common musculoskeletal causes of their extremity complaints.

Eventually, most patients with auto-immune and connective tissue disorders finally get a diagnosis when they are so sick that their diagnosis is approaching “no brainer” territory. At this point those doctor shopping, symptom magnifying patients with multiple psychiatric issues were none of those things, but merely “right” all along that something was wrong with them.

Unfortunately, the frustration does not end with receiving a diagnosis. In my opinion, Western Medicine not only fails in expeditiously diagnosing patients with auto-immune and connective tissue disorders, but also in the treatment of these clients. The problem lies in the essence of what Western Medicine is, in my opinion.

What happens when you go to a doctor? They make a diagnosis based on your symptoms and prescribe drugs accordingly. They may occasionally recommend ice for injuries, rest, weight loss, but on the whole, they prescribe drugs. Their toolbox is sparse unless you consider the world of pharmaceuticals a bountiful harvest.

Alternative Medicine disciplines consider symptoms to be important clues to imbalances in the body. Alternative Medicine disciplines also view diseases to be due to imbalances, caused by nutritional deficiencies and toxins in the body from the environment including foods and beverages. Drugs are also toxins. In this way of thinking, Western Medicines’ primary weapon in the arsenal, pharmaceuticals, may cause more harm than good.

Of course there are no easy answers. I would encourage anyone who feels that something is wrong with them and they are not being heard by their doctor, to hang in there. Bolster yourself and take action.

Educate yourself as much as possible on detoxifying your body. I started this process about 3 1/2 years ago. I also started seeing an alternative medicine provider shortly thereafter. I had multiple chronic health diagnoses and was prescribed more than a couple medications. I strongly felt that if I didn’t take action and make some changes, I was headed for some type of auto-immune or connective tissue diagnosis.

If you have been diagnosed with an auto-immune or connective tissue disorder, and you are not satisfied with your current medical care, read and research as much as you can. Go to forums for these conditions. Find a book that explains things in a way you can understand. Mary Shoman presents a great balance of Western and Alternative Medicine resources in her books.

If you feel Western Medicine healthcare has totally failed you, consider seeing an Alternative Medicine provider such as a Naturopath, Herbalist, Homeopath, Acupuncturist, Chinese Medicine provider, or Chiropractor.  Yes this kind of care will likely not be covered by your healthcare plan. Take out a loan. You’d do it to buy a car wouldn’t you? Just do it. Choose you.

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Nothing’s Wrong with You- Failure of Healthcare with Auto-Immune Disorders