HOW DO I EXPLAIN IT?
It may feel almost impossible to sum up the physical and emotional pain you have been through, let alone explain something even doctors don’t fully understand. First thing is to realize, you do not owe an explanation to everyone that walks by nor everyone that asks. Do know that people ask questions for various reasons.
- They ask because they care. -Those that care
- They may be an employer, professionals providing services, other doctors non-related to the illness (dentist) or someone that needs to know in case of emergency. -Professionals
- They possibly know of someone in a similar situation, and they are trying to see if you have information that could be helpful to them. -The short version
- Being polite- They are not looking for any great detail. -The shorter version
- People are sometimes nosey. -The shortest version
Those that care- You may feel more comfortable with friends and family divulging your thoughts, feeling, and frustrations. However, know that you are under no obligation to do so, unless you are willing and ready. It’s ok to tell them you are still trying to wrap your head around things, learn more yourself and would love to talk to them when you are more ready.
Professionals- Some specific information may be more necessary for employers or other health care professionals, etc. If you need to rest often, then your employer would need to know and address any concerns either of you may have. If you have involuntary movements your dentist will need to know, so he/she can use extra precautions while working on you. Also, Chiropractor, Acupuncturist, and Massage Therapist would need to know if you have trigger points that effect your movements and/or tremors and explain how you would like them to handle you if you do, ie. leave you be, call someone, etc. When making these appointments you may mention your situation. You both may need to allow for extra time incase of flare ups.
The short version- “I have a neurological disorder. It is when the brain does not send and receive messages accurately. There is little known or even understood about this (submit diagnosis if you would like) disorder. It has been under-researched for many years, but is finally getting the attention it deserves. I am grateful as researchers around the world are doing their best to find answers. I am hopeful they will then have better treatment plans.”
The shorter version- “I have a neurological disorder. It is when the brain does not send and receive messages accurately.”
The shortest version- “I have a neurological disorder”