Imagine having a problem, a medical problem.
You go to the doctor. The doctor says, "I can’t help. I don’t understand what’s wrong with you."
So off you go to a specialist. Surely the specialist can help. The specialist takes his time, talks to you a bit, and gives you meds. "These meds," he says, "will help. Maybe."
So you take those meds. The meds don’t work. In fact, they make you worse. So off you go back to the specialist. This is where it gets fun. The specialist says, "Well, I’m not surprised you got worse. That’s a side effect. Let’s give you meds to counteract the side effects."
Here’s the best part. The supposed specialist then says, "I really can’t diagnose you for about ten years. I'll give you different meds during that time and hope one might work."
At this point, you're so sick you can’t make medical decisions. If you're lucky, you have someone to advocate for you. Oh, and did I mention that your friends and family don’t call to see if you or your caregivers are okay? They think you simply need to shake it off and your caregivers are doing it all wrong.
After years of medicines that have destroyed your body, after years of hope that you'll get better, you have to wonder why you keep trying. You're now alone and still getting sicker. That diagnosis, the one that was promised long ago, is still elusive. Was your recovery ever really going to happen? Did all those specialists kick the can down the road while racking in tons of money?
Finally, when you’re at your sickest, you’re put in handcuffs, loaded into a cop car, and taken to a hospital. The hospital staff doesn’t help you either. They give you different meds, ignore you for ten days, and send you home. You don't have cancer. You don't have heart disease. You don't have lupus. You don't have diabetes. You have a serious mental illness and you don't matter.
UPDATE 9/6/2018: After six years at one not-for-profit practice, my son hasn't been diagnosed properly. He's not getting any better. He sees a nurse practitioner, not a doctor, for 20 minutes every two months. She consults a psychiatrist who has never met my son to make medication decisions.
So, we waited eight months to get an appointment with a psychiatrist in a practice that calls itself "neurological associates.” We finally saw this doctor and told him, “ We want help. We want a diagnosis. We want testing.” The doctor sent for my son’s records and we returned today. The doctor says to my son, “You have a chronic disease, most likely schizophrenia. I really can’t help you but I’ll continue to see you if you want me to."
My son is mentally ill not stupid. My son was excited to go to this appointment. He thought he'd get help and the voices might go away. My son is devastated. He says, "See, no one wants to help me.” My son, obviously, doesn’t want to go back.
The doctor says, “I'll see your son again if you want me to, but isn’t this a far ride for you?”
I am sad and angry. What doctor tells someone they have a chronic disease but “Sorry, I can’t help you?” He also said, “There’s no testing for your son. No hospital here will take him off all his meds and try to diagnose him.”
I'm angry but not surprised. Today is our 25th wedding anniversary. My husband's sad. We hugged and he went to bed. No celebrating here.