So recently this has been playing on my mind quite a bit. I’ve had the odd passing comment from people who seem to think they know my illness better than me, or that they know what’s best for me. Sometimes, yes, I agree, but usually only when I’m lacking in capacity.
As someone who deals with their illnesses daily, I’ve come to be somewhat of an expert on the matter. Particularly regarding my case. I know my warning signs, I know some of triggers, I know what I hallucinate and I recognise many of my delusions. I recently decided to come off my antipsychotic. It was a decision I made alone and it is not one I regret. Yes, my hallucinations have come back, when I have been symptom free for as long as I’ve been medicated. Some may not understand my choice but only you feel your emotions, and only you can see your hallucinations, or hear your voices, so only you can recognise what is best.
Being told I should see certain care teams or ask for medications when I know the answer, I’ve been in this game for long enough to know the rules, really gets on my nerves. Let me take control of my treatment, stop trying to baby me and take responsibility away from me when really, as an adult, I need to do this myself. I am learning how best to care for myself and I may falter, but that is okay. I won’t learn through observation, that just isn’t how I am. I have to try. And I am trying, so hard.
Don’t tell me I’m making my hallucinations up, because unless you have a magic way of seeing through my eyes, you can’t make that call. Yes I know it’s hard for you to believe something that you can’t see, but it is right there in front of me and it’s so demeaning to be told they aren’t real.
Don’t tell me to ring my team and use rhetorical questions to try and bring me down. I don’t need you to. Simple. I am okay. If I don’t seem well, bring it up in a kind and empathetic manor, saying ‘your mood isn’t good, is it?’ doesn’t help the matter. I feel judged and often interrogated. As someone who has suffered with paranoia, feeling interrogated only brings a downward spiral of negativity and overthinking, which isn’t what I need.
So I thought I’d leave you with a list of things I, and many others, do need.
- I need you to be patient, let me come to you and try not to quiz me about my illness.
- Do try and understand what I am going through, even if it’s relatively inconceivable.
- Know that I know the most about my illness, from my perspective. Yes, doctors and nurses have been taught about bipolar, or anxiety, or psychosis, but I live with them daily. They may know more of the clinical knowledge but I know how I cope with them.