I’ve had the privilege of meeting many wonderful people who happen to be diagnosed with mental illness and look forward to many more.
There are many stages we go through with any life change, and mental illness is no exception. Families have stages of acceptance, certainly the Person Affected by Mental Illness (PAMI) does too. *
When I talk with a PAMI who is at a stage of acceptance of his mental illness diagnosis, takes her own meds without supervision and is living a functional, productive life, I often ask if there were any particular turning points in their recovery process. In particular, I want to know: Was there a moment when it clicked? When you accepted your diagnosis as true?
Not once – not once! – has anyone said, “My mother finally convinced me I have schizophrenia.”
So – this is not my job. Whew. This is my son Ben’s journey, and all I can do is be, as he once wrote in a beautiful poem to me, the “railing in the stairwell as I help myself up a mountain.”
Accepting Mental Illness Diagnosis Can Take Time
Last night, I retrieved a voice message from one of the readers of my book, Ben Behind His Voices. She is the mother of a 21-year-old son with schizophrenia and their family is having a tough time right now.
Ben is in the room as I hear the message – on speakerphone.
“Are you going to call her back, Mom?”, he asks.
“Sure, Ben. I don’t know how much I can tell her that she doesn’t already know, but maybe I can just listen so she doesn’t feel so alone.”
“Oh.” Is this too much for him, I wonder? Should I have shielded him from this?
Then Ben makes an offer that amazes me.
“How about if I talk to her son? Do you think that would help?”
Wow. He is seriously willing to – seems to want to – do this.
“Ben, that is so wonderful of you to offer.” I try to hide my surprise – and my concerns. “Just wondering, though – what would you say to him? Would you want to tell him you have schizophrenia?”
Ben and I have agreed to disagree on this. When I stopped trying to “convince” him, things between us got much better.
“Mom, ” Ben says, “I’ll just tell him that I used to go off my meds and that now that I’m staying on them, life is better. I’ll tell him the truth – that I don’t necessarily agree with my mother about any illness and that we don’t argue about that anymore. All I know is that I take my meds now and don’t try to get away with anything.”
Tread carefully, I think. But I have to ask: “Why?”
“Because I like that I am doing better and I don’t ever want to go back to the psychiatric hospital. So I’ll give him good advice – to take his meds.”
And that, I think, is good enough for now.
So we try to call the family back, but no answer – twice. I hope – we both hope – that they are okay. We will try again – if the same offer from Ben still stands. You never know. But I am so glad that his heart spoke up tonight.
Ben’s recovery journey has taken him far in the past ten months – in fact, he has traveled far in the past nine years since finding the
medication balance that works best for him. (and, yes, there has been backtracking on that trek as well). Still, he does not say he has schizophrenia. He will tell you that he is doing much better in life because he no longer smokes pot - and AA/NA recovery meetings provide a wonderful sense of community for him in that realm.
That’s fine with me. As Dr. Xavier Amador reminds us about medication adherence, “You do not win on the strength of your argument, you win on the strength of your relationship.” I do not make it my job to “convince” Ben that he has schizophrenia. It is just something he now, finally, agrees to do – at least for today.
Right now – that is enough.
*(Yes, we are all “affected” by someone else’s diagnosis, but here I use this term for the person who has been diagnosed. It beats saying “consumer”, a term some tell me is insulting to them – so for now I use “PAMI”, an acronym I created. Open to other ideas, of course, as we search for a respectful and accurate term. I think I like PAMI because is has ami in it, French for friend…)