Why the Medical System Doesn't Work For Us

We in the chronic illness community are at the mercy of a system that wasn’t built for us and isn’t equipped the handle us. The current medical system is geared mainly towards acute illnesses, things that can be healed. Chronic illness doesn’t work that way. They aren’t ‘sexy’ things for doctors to treat. They can’t be healed and they often don’t kill the patient, so the measure of success is very subjective. Success in this case is when patients have a high enough quality of life. That is nearly impossible to measure or report on, and it takes a lot of work to get there. As a result few doctors choose focus on chronic health problems.

Many doctors haven’t even heard of some of these conditions. Some were covered briefly in medical school and they haven’t encountered anything like it since. This is beginning to change and awareness and correct diagnoses are becoming more prominent but it’s still a problem we face.

Our bodies don’t work like normal people’s bodies work and the problems are widespread. When you’re nervous system and your connective tissue are the parts that don’t work right, everything doesn’t work right. Some of the problems are minor inconveniences but some things can be incredibly debilitating. When I have a dislocation I don’t go to the ER. They don’t know what to do with me there. Usually the joint either slips back into place or I’ve already put it back into place. Instead I wait until my Osteopathic Doctor can see me. Truthfully I’m one of the lucky ones to have even found a doctor in my area that can treat me.

Since being diagnosed I’ve realized that trusting my own instincts about my body is sometimes more helpful and more accurate than an uninformed doctor. I didn’t know it at the time but I’ve literally spent my whole life learning how to function in this body. I’ve spent 29 years practicing to stay functional when my body doesn’t work the way it’s supposed to. In contrast a doctor who isn’t familiar with these types of conditions has a very hard time changing their mindset to include problems with connective tissue (which is everywhere) and the autonomic nervous system (which controls everything you don’t think about). It’s a totally different mindset than the one they were trained in.

I have learned to trust myself and to seek out doctors that are familiar with these sorts of disorders. It is a partnership. Doctors are not simply a care provider and I am a care receiver. I have to be active in all parts of this process, working with my doctors to get the help I need. I have to communicate clearly the things I need help with and then they need to hear me and think it through for my body. They give me treatments and then I need to follow through on those treatments and report back on what works and what doesn’t. In that way we can narrow in on the things that will actually be the most helpful. Keep working with your doctors and keep working hard for yourself. You are worth it!