Is there a support organization for your illness/disability that puts out educational materials? I have a mitochondrial disease which are "invisible" diseases and most people have never heard of them. I look OK but the metabolic cycle that controls my muscle function is messed up so I have weakness, severe fatigue, pain and cramping, etc. I went from running marathons to barely able to walk a mile in about 9 months. The United mitochondrial disease foundation has great educational materials for friends and family because it is " invisible". I shared their brochures and pamphlets with my T when I started therapy so she could understand better what I go through. Though now she has seen me having muscle spasms so bad my limbs flop around uncontrollably which also opened her eyes.