This is a topic from INSTAGRAM. Reply as normal, and we will post it to the user on Instagram.
Belongs to: https://forum.heartsupport.com/t/41426
From openmind_freespirit: I’m struggling to cope with the loss of my health and the life I once knew. The last four years have been the hardest of my life. Our medical system in America is an absolute atrocity. Completely devastating. I could write multiple novels on the unfathomable negligence, the gaslighting, the greed, the lack of compassion, the horrifying truths of the pharmaceutical industry. I have had to do all the legwork/research/advocacy in the world to get all of my diagnoses—- years of malpractice. After years of the wrong diagnoses, I finally learned that I have a connective tissue disease, along with like ten other disabling co-morbid conditions. I am in pain every single second of every single day… pain that most people couldn’t imagine living one day in. Every system of my body is failing and every single day is a massive struggle… yet nobody can understand what I’m going through because I look “normal” and because I maintain a super positive attitude and try to stay super active despite my limitations.
My number one piece of advice for anyone going through a similar situation: BE YOUR OWN ADVOCATE. Speak up. Don’t stop speaking up until you’re heard and respected and validated.
A quote I wish someone had told me sooner, surrounding complex illness: “If you can’t connect the issues, think connective tissue!”
See a geneticist when in doubt.
And as cliche as it sounds, ya gotta try to stay positive! It would be so easy for me to stay in bed every single day with the level of pain and compounding symptoms that I deal with, but I get up (almost) every single day and stay positive, and do good, and be kind, and be grateful, and just try to live my life to the best of my ability. 
