I am not here to bad mouth clinicians or to try and tell you they are all wonderful. In the past 37 years I’ve had lots of Psychiatrists, Psychologists, Counsellors, Community Mental Health appointments and a hospital stay (somehow I have managed to avoid hospital on numerous occasions). During that time I have experienced the good, the bad, the ugly and the downright scary.
In the early days, long before I had learnt about assertiveness, I followed Clinicians instructions, rules and prescriptions blindly. I placed all my trust in those caring for me and never questioned their opinions, attitudes or treatment of me.
Some were fantastic and I benefited immensely from working with them, even though I was passive in the supposedly two way relationship. Others, I felt intimidated, bullied, disrespected, dismissed, foolish, humiliated, ignored and the list could go on and on. These are points that I all too commonly hear from 100’s of people I have had contact with, through my Mental Health Advocacy.
When I was 22 I was under the treatment of a Psychiatrist for my suicidal depression (I was not diagnosed with Bipolar until I was 35). I lived in a rural town and had very limited access to social interaction or engaging activities and I had a 3 year old son and a 4 month old daughter to care for. His answer was for me to take up gardening. I told him I loathed gardening, but he waved his hand dismissing what I told him, saying ‘you need to do something and gardening is good’. The next time I went to see him he berated me for not having spent time gardening. I again told him I loathe gardening and again he dismissed what I said. This went on weekly for 3 ½ months. I could not understand why he was adamant I start gardening ‘for pleasure’ when I detested gardening and forcing myself to do it would not bring me pleasure and probably make me more distressed, angry, resentful, etc. Being at that stage I did not have an assertive bone in my body, I just stopped seeing him.
When I was 35 and had just been diagnosed with Bipolar, I encountered another Psychiatrist who made me feel intimidated, bullied, disrespected, dismissed, foolish, humiliated, ignored, etc, but he was the only one that came to our region, so I had no other choice.
My first run in with him was in relation to the side effects I was experiencing with Lithium; extreme migraines lasting for at least 7 hours with vomiting so violently I was wetting myself. At this stage it was at the start of taking Lithium and my blood serum level was only at 25% of what it eventually should be. I raised with him that I felt the increase in migraines was a side effect; he dismissed me indicating migraines were not a side effect of Lithium and to keep taking it. I persevered and the migraines got worse and more frequent, so I stopped taking the Lithium and they went away. I booked an appointment, told him the outcome. He stated “well if you are not going to take the Lithium, you will just have to go without medication”. The thought of going back to where I was pre-diagnosis filled me with fear, so I surrendered and recommenced the Lithium. Over the next 11 days I had 5 migraines; on the non-migraine days I still could not function because I had migraine hangover.
My second run in with this Psychiatrist was again due to side effects encountered, this time with the old Antipsychotic Stelazine. Within 5 days of starting this medication I was experiencing facial involuntary movements and my eyes rolling back in my head. I made an appointment and again he told me it was nothing to do with the medication. Two days following this appointment my pupils fully dilated and I went to see my GP. I told her about this and the other symptoms I was having and she immediately queried what psychotropic medication I was on. She told me to stop taking the Stelazine immediately, as I was experiencing symptoms of Tardive Dyskinesia. For those who don’t know, Tardive Dyskinesia can become a lifelong condition, even if you stop taking the medication that caused it and I have since met people who now have this for life. Luckily for me, I was not one of these people.
As you can imagine, having placed my total trust in this Psychiatrist, after all he was the specialist, I was angry, distressed, confused, felt betrayed and much more. It triggered an elevated, agitated and suicidal mixed state that was so bad my Psychologist contacted numerous other Psychiatrists to get me hospitalised. There were no beds available, so I was left in the care of my family. I couldn’t believe that someone, especially a specialist, could place me in a position where I could have been subjected to those symptoms for the rest of my life. Was I not dealing with enough, trying to combat the symptoms of Bipolar? I am still perplexed and angered by this.
However, there was a good result from this. My Psychologist got me into a new Psychiatrist outside of the region I lived in and he was fantastic. He kept abreast of all new psychotropic medications and treatments, taught me how to be assertive in relation to my mental health needs and requirements and so much more. He listened, discussed, negotiated, explained and worked with me. I will be forever grateful for the work we did together and I still mourn the day I had to part ways with him because I moved to far away to continue accessing his support.
So, what did I learn from all this? To be assertive. Not to blindly trust. To ask questions. To expect to be treated with respect. To expect to be included in decisions concerning my medication regime and treatment. To expect things to be discussed with me, not to be dictated to. To expect to be treated with dignity. That nothing less than working together on better managing my illness is satisfactory. To remember, I am paying them, therefore they are working for me and I will not accept anything less than a joint partnership.
Ok, so all those changes in my demeanour didn’t happen overnight and I had to unlearn the lessons from my youth that you must do as you are told, after all, they are the specialists. I also had to let go of my anger and distrust, because not every clinician is bad. Some time ago I learnt about the 80/20 rule. 80% of people are good, 20% are not, or 20% of people f**k it up for the other 80%. I find I apply this rule a lot in my life. But I digress. I decided what I expected in a relationship with clinicians and I worked hard until I reached the level of assertiveness (not aggression) needed. If a clinician did not meet my needs or expectations after several interactions, I would seek a new one or where I didn’t have that choice, request an alternate clinician.
My current Psychiatrist is great, funny and very droll. I respect him and he respects me; well actually he says he finds me intimidating because I am very knowledgeable and insightful around my mental illness. But even though we have a very good working relationship, I became aware of something else that negatively impacted our interactions. That was me putting on my masks, hiding behind a façade or whatever you want to call it.
I had to get a report completed and he told me he had seen me 5 times and that each time I had been well. I don’t know what I looked like from his viewpoint, but from my side my eyes were bulging out of their sockets. Not one of the times I had been to see him had I been well and I had told him this each time by stating “I am experiencing……………” This day I learnt that being high functioning, able to remain composed, hold an intelligent conversation, all while falling apart on the inside has a negative outcome. I explained all this to him, advising that “I was far from well and that in future I will not allow societal norms to dictate my appearance and I would come in like I really felt deep down; in my pj’s, dressing gown and slippers, bed hair and panda eyes from my mascara. I would no longer allow my intelligence to shine through, nor my ability to articulate what I am experiencing.” Now it was time for his eyes to bulge out of their sockets. In seeking this report, we now have an even better Dr/Patient relationship and he listens more closely to what I am saying. So many times I stand up before people and present myself as if I don’t have a care in the world, whilst inside I feel like I am dying or am so wound up and agitated my head is going to explode off my shoulders.
So, for me the learning continues and I doubt it will ever stop. But two way communication is the corner stone of a good clinician/patient relationship. These following points are those I have found to be the most important in ensuring you get the most from your two way relationship.
Remember at all times that you and the clinician are a working partnership; you are not there to be dictated to. If this does not give you the confidence you need to be able to have shared control of the appointment, take a support person with you.
Keep a running list of what you want to discuss and questions to ask at your next appointment.
Be totally open, honest and truthful – they can only work with how you present and what you tell them, so being open and honest means you give them better tools to work with.
Mental illness makes us do a lot of things that cause shame, guilt and humiliation – no matter how embarrassed or fearful you are, you still need to tell the clinicians about these behaviours/episodes.
If you don’t understand, ask for clarification – equally, if you are having a day where you can’t comprehend things, tell your clinician at the start of the appointment. Ask them to dot point their recommendations and/or list what you should research further when feeling clearer.
It is ok to “Agree to disagree” with your clinician – rather than continuing to argue when you know neither of you will change your position/point of view, just say “we will have to agree to disagree on this point” and move on. I use this technique a lot, in life, in general.
Just as you expect to be fully listened to, your clinician has a right to be heard in full – hear them out, consider what they are saying and then respond.
If a clinician is talking over the top of you, put up ‘The Hand’, palm out like a police person and say “please let me finish what I was saying and listen, as it is extremely important to me.” If they will not do you this courtesy, which is your right, perhaps you will need to consider seeking out a different clinician.
If you have trouble putting things into words the clinician will understand, organise an advocate to attend with you for a few appointments until you gain the confidence to be able to manage them by yourself.
Assertive is not aggressive! It is putting your point across in a calm, rational and respectful way, with conviction and determination behind your words. It is not raising your voice, growling or throwing a tantrum.
If you feel they are misunderstanding what you have told them, correct the thinking by explaining again so that they do understand. If you do not correct their thinking, they will assume they understand correctly, which is not good for management of your illness.