| | Re: Does it really matter what is wrong?
Like many of you, having a definitive diagnosis (and then several and now more than a dozen diagnoses) has allowed me to qualify for social security benefits, qualify for specific state benefits, able to get pharmacy help in paying for services, access to disease specific societies who often offer help paying for things not typicaly covered by insurance i.e ramps, wheelchair lifts, hand controls, short term adhoc CNA/nursing care as examples.
Getting diagnosed with a genetic disease helped us identify other family members with that same disease incuding one of my children (the other has declinied to test) and helped explain many symptoms.
Getting diagnoses has the benefit of giving Western Medicine the ability to develop a treatment plan......
Getting a specific diagnosis helped me get family members to "believe" that I was really sick and in many cases to help me in supporting my needs for caring for mysef for example...Still I face comments from family members such as "I exaggerate my symptoms to get attention or to not have to participate in an activity and even more ugly, that perhaps I shouldn't be able to care for my minor children because of my illnesses.
The problems come in for me now because I have SO MANY definitive diagnoses and even more probable and possible ones is that I am deemed to complicated by many doctors, I am turned away by home health agencies as to complicated, and I battle the side effects of one treatment versus another.Still because I achieved the benefits mentioned above; I am able to live a reasonably acceptable life as I still search for better ways to treat my illnesses, symptoms, etc.
I have and encourage others regardless of being diagnosed or not; to embrace natural methods of medicine and healing such as healing leaky gut, finding the healthiest eating program you can with the most natural foods not marred by environmental toxins, pesticides, preservatives, chemicals, identifying vitamin and mineral deficiencies; finding ways to incorporate some type of exercise in your life (often difficult for example for me when I am in severe pain or have no mobility at all but options are available such as exercising in a wheelchair or modifications to existing exercise programs); and if you can afford it identifying a holistic or naturally minded doctor(s) who can help you make the best choices to bring you to as healthy a state as possible.
So I think there are many sides to whether it matters what the real diagnosis actually is and it may depend on the situation. Ultimately and most important is making the best choices to keep you as mobile, active and healthy as possible and to educate family and friends about things you learn along the way especially for conditions which run in your family lines or when you need o want friends and family to understand how you are doing; when you need help, when you don't.