I don't think "they" know what to do with those of us who have invisible issues, quite frankly. I have been diagnosed with several that are very close in description: Neurology, Peripheral Neuropathy, Fibromyalgia and Restless Leg Syndrome...It/they have gotten horribly worse as I have aged (I'm 85) and I have run out of things to try. Read: They don't know what the heck to do with me! I am still on steroids and two other pain meds, but they hardly touch the pain, tingling, numbness, stabbing feeling.
I look perfectly normal for my age, even "much younger" I hear all the time. But no...I never discuss what keeps me up at night and drives me to the edge of a cliff many times a week! I play mind control games with this dreadful way I have to get through my days. And, And, AND, AND I will NOT let it win!! It's a choice I made several years ago. No crabbing or complaining about it! No pity parties. Just live the best way I choose to live.
Bright Blessings~