Getting the Mental Health Treatment I Need Shouldn't Be This Hard
When we think of someone who has died by suicide, we’re all too often filled with thoughts and wishes like, “I wish they had asked for help,” or, “I wish I had known how bad things were.”
It’s often implied the person was struggling in silence, and regrettably, this is all too true at times. However, there is also a large group of people out there who simply cannot fight the system anymore.
That is what I want to talk about today because at the moment, that is by far the category I would fall into. I have attempted suicide in the past and when I look back, it was often intrinsically linked to the desperation of not being able to find the right help. I would come up against barrier after barrier, and it was that energy of fighting so hard and being rejected by the very system meant to help me that made things so terribly difficult so many times.
Unfortunately, psychiatric help is increasingly hard to access and unlike seeing a GP, the system seems to be actively working against you. So this, in turn, forms a group of people largely unspoken for and without a public voice. When a patient in this position eventually cannot take it anymore and ends their life, the onus falls onto their loved ones to search for answers and wade through guilt about how they could have supported them more.
However, I believe that guilt and anger should instead be directed at a health system that is still designed to deal with mental health in an overall incompetent way. What so many people forget or merely don’t understand is when you have been battling mental illness for much of your adult life, the exhaustion does not come merely from that battle alone.
It comes from having to tell your story over and over and over again, essentially re-traumatizing yourself in order to see a new GP, psychologist or psychiatrist. Add hospital visits, and you get to tell your story all over again to another complete stranger. Each time you see someone new, you have to start again with the hope that this person will be the one to help you.
Going to the GP for a cold or even something more serious, you don’t necessarily need to “like” your doctor. But in any therapeutic relationship, there has to be some sort of connection, otherwise in many cases it simply won’t work. So you may have to try two, three or four people before you make that connection. This means staying strong throughout telling your story over and over again, which I can tell you is not easy when you are feeling well, let alone when things are not going well.
Then we come to the cost and wait times. Someone experiencing severe depression can see their GP and get referred to see a psychiatrist, full of hope that this person will be able to help them, only to call and find they can get an appointment in three months time. So again, the fight rages on, but a little bit more is lost.
Because of where I previously lived, I was only able to access a psychiatrist via Skype for the past year. This was a new and not overly effective experience. I told her in a recent session that my antidepressants were not working and that I felt we needed to look at something else. She responded by saying she felt she had tried everything she could and that I should get a second opinion. Now I had a couple of problems with this, for obvious reasons. Throughout my time with this particular doctor, we had tried several medications, some have worked and some haven’t. With no warning whatsoever she slammed on the breaks and basically told me she had given up. I don’t have a major problem with a doctor asking for a second opinion, but when I asked for a recommendation of exactly who I might ask for that opinion, I got nothing. I was told to just ask my local GP.
So, I was directed to a GP I hadn’t even seen yet. Whether or not this was the case, the message I got from her was, “I actually really don’t care and you can fend for yourself,” which is essentially what I had to do. Cue meltdown.
I had just recently moved to a new area, so began the hunt of finding a new GP. Now for me, this is step one. My GP is a crucial part of my network of health providers because they sit in the middle. They need to be someone who has your back and can liaise with anyone else involved. Regarding mental health, it’s a bit of gamble with GPs. You can find one who has no interest whatsoever, and I have met more of those than I care to remember, or you can get lucky and land on a good one as I had in Sydney.
I ended up being lucky. I found someone who was extremely kind, had a keen interest in mental health and who took the time to hear what my needs were. So job done on that front. Now I needed to find a new psychiatrist — that was the next enormous hurdle to climb. So on we go with the next step to find a local psychiatrist who can do both my psychotherapy and also look after my medication. It’s crucial to me that they are able to take charge of both. The area I moved to is only on the outskirts of Sydney, so it’s a significantly large health district. I asked if we could look for someone who had an interest or skills in borderline personality disorder (BPD) as a first preference. Unfortunately, this is a rare occurrence because the stigma of BPD is possibly almost as strong in the healthcare profession as it is in society.
So after waiting another week, I went back to the GP and as I thought, there was not one psychiatrist she could find anywhere near me that had anything to do with BPD. So we moved on, I said we could widen the net to someone who specializes in trauma, major depressive disorder that has shown to be treatment-resistant, generalized anxiety disorder and PTSD. All fairly standard stuff one would think when it comes to psychiatry. I am the patient.
Now, this is where I have a major problem with the system and why I know from experience it can potentially cause immense suffering and, if the person is already in a crisis, can lead to a significant risk of self-harm and suicidal thoughts and behaviors.
You see, I am the patient. I go to the doctor and lay myself bare at their feet for help. I appreciate so much that I have found someone who is kind and caring. What I do not understand is that from one week to the next appointment, there is literally nothing done to research and prepare the next steps of my recovery. When I got to the doctor on Wednesday, she brought up her computer and started looking at psychiatrists, basically asking me to pick off a screen of names I had no knowledge of and asked which one I would like to see. This website she landed on gave an approximate wait time for an appointment as well. So without any background, I picked a female doctor whose “bio” seemed to fit the bill. I was given the phone number on a piece of paper, told to go home and call them and make an appointment, after which my GP would provide the referral.
I could literally feel the emotional blood boiling up. Why do I have to all the leg work to find someone? I am the patient. With one, one, option in hand, I go home, call the number, only to be told that this psychiatrist is not taking any patients for at least four months. Immediately I felt things snap. Back to square one. I called back my GP and asked them to pass on the message that I couldn’t make the appointment and now I have to wait another week to see the GP again to see what the next steps are.
This is what I want to be really clear about. I am fighting every single day to try to find the resources to help me. I do everything my doctors tell me to do. I take all my medication and I follow their advice and always have. So feeling the panic building up inside me, I decided to continue to be proactive and call the “community mental health team.” A very blunt woman answered the phone and asked what I wanted. This is basically how the conversation went:
“Hi, I have just recently moved to the area and am having trouble finding a new psychiatrist. Given that you are the community mental health team, are you able to help me in any way to find someone?”
“No. You have to be a patient in the hospital for that to happen. Can I ask what it’s regarding?”
“I am new to the area and need a new doctor and figured you may be able to direct me in the right way in order to find someone.”
“We don’t do that. You can always google psychiatrists in your area and then call around to see if you can get an appointment, otherwise, if you are feeling suicidal now, you can come to our triage department and we can assess you for admission.”
I am the patient.
I felt my trigger of rejection snap in an instant.
These are the joys of BPD, my emotional response to a situation is exponentially larger than someone not living with it. I felt utterly hopeless and once again it fell to my family to try and pick me back up again. My mind raced with thoughts of, why? Why do I always feel like I am the one scrambling to find help? I’m 39 years old and have gone to every appointment you can imagine, yet I am still fighting every day, every week, to find the right treatment. When I was in Sydney the barrier was that I couldn’t work and get the help I needed at the same time. I lost jobs at the end of my time in Sydney because I told employers that I had a psychiatrist appointment. If I took time off, the main career I was in for seven years would sent multiple letters to my doctor and make him fill out forms about my mental suitability to do my job, a job I had received numerous awards and accolades for. It was utterly exhausting. It was like waging a war on all fronts. My own private battle, the stigma that exists around mental health in the corporate world and door after door slamming in my face from the health system.
When we talk about the “battle” or “fight” of mental illness, for me 80% is the illness itself and 20% is the system that actively fights back against me, making not only my illness worse and my life more chaotic, but it also has a profound effect on my loved ones. At times that 20% is far more dangerous for me than the other 80%. It’s because it leaves me feeling like there is no hope. The pressure it puts on my family is quite simply unfair. They shouldn’t have to get nervous every time I go to a doctor’s appointment.
I am the patient.
We are the patients.
I imagine there are a lot of people out there like me. Whether you are a loved one who cares for something living with a mental illness, or whether you are riding the roller coaster yourself, we have to stay strong. We cannot be the forgotten ones that fall to our knees after so many years of fighting and trying our hearts out to make a better life, only to have it ripped away by a system that at times feels like it actively works against us. My hope is that the stronger I get, and the more of these sorts of stories I can tell, I’ll have the chance to make some sort of difference. I often think of how incredibly lucky I am to have the support I do and how frightening it would be to not have that support.
I am the patient. But I am also a warrior and I will fight until I win because what currently happens to people like me just isn’t right. If someone doesn’t stand up and say it no one will. So here I am.
Photo by Clem Onojeghuo on Unsplash