Is anyone listening?

One of the hardest things I've ever done is come out as schizophrenic. It was even more terrifying than coming out as gay. It really says something that I was willing and able to come out as gay to my very Mormon family before I was able to tell them I am seriously mentally ill. I even hid the schizophrenia from my doctors when I moved there to Utah. My experiences in California were so devastating that when I moved I just told my new doctors I had clinical depression and left it at that. That is what my mom has, so it was familiar and "safe."

Of course, that means for years I did not get the treatment I really needed. But I was trying to get treatment for "mysterious" physical ailments: overwhelming pain all over my body, unexplained hives and skin swelling, weakness, constant headaches, etc. And I learned the hard way by dealing with the California doctors that as soon as they see "schizophrenia" written in your records, they suddenly stop listening to anything you say. It is an automatic "it's all in your head."

I was finally able to get a diagnoses of fibromyalgia, although no treatment was ever forthcoming. I react strange to any and all medications and I have a paranoia about taking meds. And because I have become so adept at hiding any and all symptoms - physical and mental - my doctors never really pushed for treatment. If I wasn't complaining, I must be OK.

Fast forward 12 years. I am not OK. The fibro and other autoimmune problems are bad. Really bad. But now I have no resources to get the help I need. I have state coverage that lets me see my regular doctor, but it doesn't cover any tests or specialists. So I am stuck, unable to see a neurologist or reumatologist like I should be. I am only able to see a psychiatrist because he volunteers at the low-income clinic for people without insurance. My application for disability is now nearing 2 years.

There are groups that say they are there to help people like me. NAMI and NIMH have programs to help the mentally ill - if I live in Salt Lake City. Correction, they have programs in southern Utah, but they are mostly for those with drug addictions or who are recovering from abuse. They have nothing that deals with people who have a serious mental illness. They have teen support groups and senior support groups, but nothing for a 41-year-old. They have an education program for families of people with bipolar disorder or depression, but nothing for schizophrenia.

I have tried contacting these groups and others. I have offered to share my story as part of my therapy. I have written essays and articles describing what it is like to be schizophrenic. NAMI, NIMH, It's OK To Talk, Trevor Project, and other groups reply that it's wonderful that I am sharing, but no one will publish. I don't fall into the right categories. I'm too old or too young. I haven't gone to one of their groups or given them money, I haven't actually been hospitalized for a suicide attempt (even though I have attempted), I don't have the right mental illness ... basically I fall through the cracks and no one wants to listen to me.

I need to talk. I need to share or else it gets bottled up and I get even more sick than I am already. But what do you do when no one listens? What do I do when the groups and organizations that were invented to help people like me tell me I'm not worth listening to? Well, you start an obscure blog that no one will ever read, but at least it gets the pain out in words in stead of blood.