I realised recently, that I had been going to the hospital appointments and tests alone. For a number of years. It made me feel really exhausted. I am exhausted. The appointments are increasingly challenging, because of cumulative trauma from being brushed off, or misunderstood. Sometimes I have the strength, but after five years of telling my story, and looking at puzzled faces and nonchalant expressions, I have reached my end. I’m having panic attacks about appointments, and avoiding making calls, at the time I need to the most. Squeaky wheels and all that…
I have felt like every time I meet with a doctor is a challenge, a conflict, a battle to navigate. How do I communicate clearly what's going on with me, how much will they really truly hear? I’m scared of being overlooked, not believed, or told 100 things I already know.
I can't even tell you how many times I've left the hospital crying, and sometimes not even made it to the hospital because I've had a panic attack before I even got there.
Sometimes I have really nice doctors, but being nice doesn't mean I'm understood. Being nice doesn't mean I'm getting what I really need. Certainly there are going to be times where what they have to say isn't what I want to hear, but there's also been times when what they've said has been a pile of shit.
I’ve had my GP visibly and audibly frustrated with me, when I ask more questions and try and find new paths for help. I told her that my pain medication didn’t always work, and that I’d read research that indicated long term use of pain medication can create additional pain.
“What else am I supposed to do!” was her response to me.
Another favourite was the interrogation from a neurologist, about my diet, my mental health, a degrading disregard of the pain being passed off as a headache, and being told I just needed to lose some weight and take these antidepressants.
I wondered if I had my time in these appointments again, if I’d be more forceful, or stronger, or challenge what they were saying, and you know, probably not. There is a particular power dynamic that I find intimidating and outside of my realm of connection. I probably would still shrink back into myself, feel undervalued, unheard and like it's all my fault. A pretty standard feeling I have developed over the journey. That somehow, the structure of my brain is my own fault.
I do believe in a certain level of personal responsibility with our own health, but “It's not the Chiari” has been four words I've heard way too many times.
One of the things I think has hindered me is that I don't really truly believe I'm entitled to help, any more than anyone else. I’m also way too resilient to get the attention I need.
At my core, I value others above myself, and consequently have done a terrible job of advocating for myself. I've been searching for someone else to, but guess what. Nobody will! Unless you're in a situation where you don't have strong cognitive or executive functioning, you're really going to have to do most of this yourself. I hope others have someone on their side.
The conversations are difficult. As a patient, you are anxious, emotional, eager for answers and solutions. As a doctor or specialist you are looking for clinical evidence, data and technical information. The two purposes are so disparate. It creates an immediate divide. This is why doctors who listen and value a patients qualitative input of their experience is so important. People like things to be neat and tidy and fixed, but they will not do it for you.
It's arduous, frustrating and heart breaking. I'm exhausted. I have had times in between where I just believed what people said, that it must be my own doing, and tried so hard to change it. Through dozens of therapies, appointments and self help methods. Things worked to a certain degree, sometimes. But nothing has made any significant impact on my experiences.
So then sometimes, I've just not had the energy to pursue new paths. And I've felt misunderstood for that. Why wouldn't you just keep going to the appointments? Keep trying? Try veganism! Try mindfulness! What about this osteopath. AGHHHH. Well meaning, but seriously guys, I've TRIED EVERYTHING.
Good questions, but my answer is that I have been the only one fighting for myself, and I ran out of steam. I did everything I could do to make it better, and it just only got worse. If effort could fix the structural defect in my brain, it's be well and truly fixed.
I've been told it's just that I'm overweight. I've been told it's not the Chiari, despite the pain stabbing right in the base of my skull where it is. FOR SO MANY YEARS. I've been told it's migraine. I've even been told I have epilepsy, which I knew was not true and had to fervently fight against that.
I can't even fully communicate my frustration, defeat, cynicism and sadness. And even though finally we are doing something about it with the surgery, I am still missing questions, I haven't been categorized as I feel like I should, and I'm anxious to ring the clinic. I think there is a certain cumulative trauma that comes with these long term situations, and for me, at the moment, I'm not super resilient about it. Next week might be different.
So here is my top tips for advocating for yourself from years and years of enduring all this.
Know as much as you can about your own body. Become self aware about how things feel and impact you, be conscious of what medications do to you.
Know as much as you can about your condition, if you have a diagnosis. Read all the stories, find out how things get treated from a best practice point of view.
Don't be afraid to shop around. You might not connect deeply with your health professionals but you at least need to feel comfortable with them, and that they understand your condition, or at least shows interest to find out more. I made a mistake of staying with a GP who didn't.
Make more phone calls. Keep asking, hassling, for appointment times and information. Squeaky wheels get the attention.
Go to appointments pre prepared and make sure you get through everything on your list. I was terrible at remembering what I wanted to ask, and even when I'd write it down I'd forget to refer to make sure I covered everything.
Trust your gut. For me, I've known all along that the Chiari is the problem and I've spent years now trying to convince myself it's not. But I couldn't shake it, and now we are back full circle and treating the Chiari with surgery. I’ve been traumtised by the system, it’s not an easy place to be, and advocating for yourself is not the easy road. I am now at the point where I need someone to speak for me. I’m in so deep with anxiety about appointments, that I’m not getting across clearly what I want to say, or influence the outcomes I need. I hope you have someone who can speak for you when you need it. If you don’t, be bold and ask for help.