Mental illness did not kill Dominique; STIGMA did! Our focus is to help you understand what you're facing with a mental illness diagnosis.
First of all, mental illness is a medical diagnosis, not a personal weakness. We believe STIGMA is the leading barrier to the early diagnosis and treatment that leads to better outcomes, as it was for Dominique. We all know what generally comes to mind when we hear the term mental illness. It's exactly what he feared. I vividly recall him telling me "I feel like a freak," and "I feel like everybody knows I'm sick."
These feelings are the definition of STIGMA! The feeling of shame; that it's a weakness; that it's all your fault. These feelings kept him from complying with his treatment plan. Being betrayed by your mind has to be one of the most awful events any person can experience during their lifetime. It is also very difficult for families and friends to understand, accept and support. It's even more difficult when you don't know where to look for help, what to say, or how to encourage and motivate that person to follow their treatment plan.
I am not a doctor; I'm just a heartbroken dad who misses his son every day. I can only share with you what I learned after going through this and pray the outcome is better for you and your loved ones. Don't give up; RECOVERY IS POSSIBLE!
Here's what I learned:
Learn all you can about the diagnoses and symptoms. Don't assume you know what to look for; you probably don't. Don't just assume you're dealing with drugs; at first I actually prayed that's all it was. You have to look deeper. Listen to the doctors, then go beyond that to understand as much as you can as fast as you can. Ask questions. Demand answers. FIGHT! Today there are many websites and other resources available to educate yourself.
DON'T JUDGE! Don't treat the person like they are "crazy or stupid; they're not!" They don't deserve it and they certainly didn't ask for this. Mental illnesses are a product of the interaction of biological, psychological, and social factors. Research has shown genetic and biological factors are associated with mental illnesses, substance use disorders and suicide. If you demonstrate your continued respect and support for them, they are more likely to stick with their treatment plan.
Attend doctors appointments with the person when possible; don't just drop them off. Even with me sitting right next to him during his appointment, Dominique would not be completely honest with the doctor. He would tell the doctors what he thought they wanted to hear. I would often talk with him on the way to doctor's appointments, telling him that "if I notice you not being truthful with the doctor I will correct you, but I'm not trying to embarrass you. I'm trying to get you the best help possible." I loved him enough to tell the truth in his presence, but had to be careful not to embarrass or humiliate him. That would only push him away from me and the help he needed. Simply put, if you're not honest with the doctor the doctor cannot help.
Attend family counseling and/or support groups. Get help for them, yourself and other care givers. The more you talk to others living with the same situation, the more you will learn. You will need to consistently work together with the other care givers. Dominique and I attended weekly family group meetings. It was sometimes a challenge to get him there, but I thought we benefited most by talking after the meetings. I know he realized I was trying to help him. I recall him telling me (a couple times after the meetings) that he knew what I was trying to do and thanked me. Remember care givers need support too. The meetings were very open and helpful. You can learn a lot if you participate.
Verify the person is taking their medication. Don't assume the person is taking their medications on their own, or sometimes even if you watch them put it in their mouths. Dominique would often "cheek" his pills. Again you have to love them enough to verify they have really taken the pills, and yes it's hard to do, but necessary. As you hear on every prescription drug commercial today, all come with potentially serious side effects. However, it is extremely important to take medications as prescribed by the doctor, consistently. Not doing so also has side effects, so if the doctor doesn't know the medication is being taken infrequently, they cannot make the proper adjustments. Figuring out the proper medications is a frustrating process for the patient, you and the doctor, but consistency appears to be the best method. Obviously if you experience signs of serious medical reactions, contact your doctor immediately. Dominique experienced nausea, weight gain and sleeplessness, but we worked through most of it and thought we finally got the medication right. But several months before his passing, he stopped taking it altogether.
Be aware of possible of drug and/or alcohol abuse. Persons living with mental illness often "self-medicate" with alcohol and/or other drugs. Like Dominique, many decide to self-medicate rather than take their prescription medications. This is usually caused by frustration with side effects and stigma; it usually leads to trouble! In Dominique's case he often told the doctor marijuana suppressed the voices in his head. To my surprise the doctors confirmed that, but discouraged its use as they told us once the effects of the marijuana would become less effective over time and the symptoms (voices) would only return in greater frequency and intensity, and eventually he would graduate to using stronger drugs. Now you will have a person living with mental illness and a substance use problem.
Help maintain daily routines. We found that maintaining daily routines like sleep schedules, hygiene, healthy diet and exercise positively affect the treatment plan. This will likely become less important to those who are diagnosed, but very important to maintain.
You alone cannot save them. I prayed God would allow me to fight this battle, but it doesn't work thay way. I told Dominique I would fight for him as hard and for as long as I could, but I could not win if he didn't engage in the fight with me. Don't forget that; if they don't work the treatment plan eveyone loses. Care givers can only help; we cannot do it for them. That's how I lost; I couldn't keep him engaged in his treatment plan. I say I lost, but maybe he didn't. I'll never know in this lifetime.
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