“What do you have?”
I rarely have trouble answering the questions I get from other people, but I do have trouble when I get asked this question. Our medical care system is diagnosis-driven, and our society, as a whole, is diagnosis-obsessed, so I understand why some people ask me this question. In their minds, there has to be one main culprit for what is happening to me. As a whole, we have become accustomed to explaining what is going on in our lives by providing a singular, definitive diagnosis. However, the situation is usually more complex than that if people are looking closely and digging into the root cause(s). Do I have Lyme? Yes. Do I have Lyme Co-Infections? Yes. Do I have yeast? Yes. Do I have mold toxicity? Yes. Do I have reactivated Epstein-Barr Virus? Yes. Do I have MCAS (Mast Cell issues)? Yes. Do I likely have a rare autoimmune condition that attacks the skin in my genital area? Yes. And so on. So, then the question is always, “Well, which one is the main issue?” It always takes me a minute to answer this question, because it is not a simple answer. There is not one main issue. It is an accumulation of all of the things. This image below does not portray my life, but it is an example of how things could accumulate in someone’s life:
I have attached my current list below, even though the plan could change at any time. We don’t know the exact ages and/or timeframes for when the accumulations started for me, but we have some ideas based on symptoms. (See my Backstory posts for more details.)
If I just had one of the issues on my list, then my body might be able to handle it without me even knowing there is a problem. For example, there are a lot of people who have the Lyme bacteria in their body, but their immune system is not weakened by other issues, so their body is able to keep the Lyme bacteria in check. It is only when a lot of things pile up that the body begins to show signs of major distress. In reality, most people have health issues way before their symptoms appear and/or a diagnosis is obtained.
Because I have an accumulation of a lot of things, and because the medical care system in our country is broken, my situation is complex. There is a lot that could be different for me right now had I received appropriate medical care for the last 20+ years. I have been telling my husband since my mid-twenties that I wanted to figure out the root cause before permanent damage to my body became my reality. Unfortunately, despite my steadfast attempts to get the medical care I needed over the years, I have reached the place that I tried so hard to prevent.
The fact that, despite my best efforts, I have reached the place of permanent damage to my body and have stared death in the face is heartbreaking at times, so I work very hard to make sure I am moving through my feelings about the entire situation in the healthiest ways possible. It is important to let myself feel the normal and healthy feelings of sadness, grief, anger, disappointment, etc. and not skip over them by thinking my way through them.
After moving through feelings of sadness, grief, anger, disappointment, etc., I am usually flooded with feelings of gratitude and joy for the life I have. I have so many things that many others in similar situations don’t have — a strong sense of self, a loving and supportive husband, close friends, financial stability (for now), an awesome therapist, etc. — the list goes on and on. Having a support system is such an important part of chronic illness. On the most difficult days, I rely on the people in my life who are emotionally safe and are capable of being a consistent source of support. It is too much for my husband and I to go through alone.
Brutal. The accumulation. Our broken medical care system. Not being able to figure out the root cause before permanent damage to my body became a reality. Feelings of sadness, grief, anger, and disappointment.
Beautiful. Having more answers than ever before. Having a doctor who hasn’t given up. Allowing space for the normal and healthy feelings of sadness, grief, anger, and disappointment. Feelings of gratitude and joy for the beauty in my life. A strong sense of self, a loving and supportive husband, close friends, financial stability (for now), and an awesome therapist. Relying on the people in my life who are emotionally safe and are capable of being a consistent source of support.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 