Autoimmune disease is very misunderstood and "mysterious." This can result in seeing many physicians from diverse specialties, getting second-third- and even fourth opinions, taking multiple prescriptions, and having test after test. Despite being proactive, it is not uncommon for physicians to tell their patients there "is no cure" and there are no definitive answers for how to move forward and begin feeling better. Patients try many treatments--some which make them feel worse, some which offer improvement--but it is a process of trial- and- error, and this is tedious and frustrating. Sometimes it is difficult to identify which organ system needs the most attention since autoimmune disease can impact many systems at once and mimic other conditions. Autoimmune disease often comes with an assortment of common symptoms such as acid reflux, abdominal pain, fatigue, mental fog, joint pain, and allergies. Since these symptoms are common in many diagnoses, it can feel scattered and disjointed while trying to get answers. Patients may feel disregarded or unheard as they express their discomfort.
Further complicating the situation is the fact that traditional medical models place the physician in the role as expert and the patient is supposed to be compliant and "do what the doctor says." This can be challenging because patients may feel unheard, unsupported, and it may seem like their unique response to illness and treatment is not prioritized. Because the physician is traditionally in charge, this creates an imbalanced relationship which can make a patient feel vulnerable and unable to express very important information which can guide treatment.
Traditional medical models often focus on symptoms and symptom management. This means that there is often a one-size-fits all approach based on research and statistics. However, many patients don't fit these models and they may be left frustrated when they aren't seeing results. Medical models view the body as fragmented into parts with specialists focused on these individual parts. While one may be in treatment with a gastroenterologist, they may also be receiving treatment from a gynecologist and urologist, etc. It is not always the case that these specialties compare notes about the patient-- a true team approach is rare between disciplines.
There is always an emotional component. Which one comes first is hard to know, but the physical expression of symptoms is always intricately connected to feelings and emotions. Trauma can feed illness and illness can feed trauma. Illness alone is a trauma and trauma can cause illness. Trauma can damage a person's ability to feel his/her body, to sense what is going inside of themselves because it isn't safe to notice or feel. Trauma adds stress to the body and this compromises the immune system. Trauma feels isolating, frightening, disorienting, and vulnerable. Even events in our lives that we many not classify as traumatic, but stressful, can challenge the mind and body in ways that make illness even more unmanageable. Stress is everywhere--it is not "if" you have stress but "when" you will have stress. We all have stress.
Needless to say it is not uncommon to LOSE HOPE, FEEL DISEMPOWERED, AND TO FEEL BROKEN INTO HUNDREDS OF PIECES....
In my case, by the time I had reached my teenage years I had taken hundreds of antibiotics, visited a specialist for every organ in my body, went through test after test (some of which caused me excruciating pain and one that was almost fatal), and had too many diagnostic labels to keep track of. I had lost hope--I believed this was my life. I would be sick forever, and I was at the mercy of my physicians while I was getting more and more sick.
Childhood trauma was the norm and I detached from my body so that I could survive. I didn't feel safe and I lived in a state of fear. My physicians didn't ask me about this part of my illness or life. I kept it silent.
I had no voice--I was a perfectly compliant patient because I didn't know any better. I was taught that you go to the doctor and they make you feel better--END OF STORY. I was not taught to challenge their diagnoses and recommendations. I thought their education meant they knew more than I. I didn't understand that I was unique and that my unique history and experiences with "me" should drive treatment--NOT their education. Their education, instead, should further this understanding of "me" and how to formulate a treatment plan that uniquely served my individual presentation of my symptoms.
More devastating was that I didn't realize there were other types of healing available to me--until I reached a life threatening phase of illness. Out of desperation, open-mindedness saved my life: I was introduced to a holistic clinic and psychotherapy. As my symptoms improved, I started to believe that I could get better and HOPE came back to me...
After decades of struggle with autoimmune disease there are 3 important factors that brought me back to myself and on a path to healing--these are HOPE, EMPOWERMENT, and FUSION. These factors drive my life and are at the heart of every intervention, physician/healer visit, and treatment plan. They are my guiding values for healing: they help me assess what I need, make choices, and to put myself first. They give me strength.