There is a high cost to when doctors do not believe their patients for whatever reason bias or medical stigma it is. It could be any number of things but the cost to us can have a massive long-term toll.
We are told to advocate for ourselves but I will say that I always had a problem with this. I have been chronically ill for the majority of my life and have had some horrible doctors disbelief my pain, my symptoms and more- just not believe me. Combine that with my introverted and reserved nature and I learned to treat doctors a certain way. And to behave a certain way when it came to my own symptoms. Neither of which helped me, at all. And neither was advocating for me, at all. But they are the ones that taught me the behaviours and it is frightening that from a young age I learned the things I did.
Nothing is important until it is
I will put this under the category ‘don’t make a fuss’. Because doctors have given me looks and treated me like my pain and symptoms were not real or in some way exaggerated- I too have treated my symptoms as though they were not important until they were.
The ‘wait and see’ approach is what I call it. Is it an important symptoms? It seems like it is. So I will wait and see what happens. If it gets worse, then maybe it is. Wait some more and if it persists and/or gets even worse then, yes, make a doctor appointment. If it goes away though, then it never mattered in the first place.
Recently I did this with, well, a lot of things since I do it all the time, but I did it with my shoulder injury. I got the injury in some mysterious way no one can determine or figure out what it even was. Massive pain. Couldn’t even sweep or mop the floor. Just insane pain. So I waited it out. Thinking this will fix itself or if it is important I will do something about it if the pain remains this high for too long. 6 months of physio, a few diagnosis they may have been right or not, then doctor appointment or two, and then cortisone shots. Because as it turned out, that pain was not healing on its own. Huh.
I have done this with incredibly severe or not good symptoms. From hand numbness (MS? who even knows they didn’t), to severe chest pains with heart rhythm issues (This did freak me out by the way with severe pain and insane abnormal rhythms which who knows why now but I suspect the culprit was undiagnosed low thyroid because I did have weird heart rhythms from that) but I had had fibromyalgia chest pains prior to that and wait and see was always my approach to that alarming or not, to arm numbness, to leg tingling that progressively got worse. Some things that would freak out anyone but I just had to ‘wait and see’.
I will not go to the doctor for every fleeting odd symptom. I will write them down and remind myself to mention them sometimes. But with more than one health issues, things just happen. It gets weird in this body sometimes. But from a young age I lost the ability to discern ‘this is important’ go to the doctor ASAP or even the ER.
Watch how you say things
The next thing I learned in a pretty unhealthy way from my experience with not so awesome doctor experiences is to watch how you say things. Do not be bluntly honest about your pain, fatigue and symptoms because they likely will not believe you. So you have to express yourself carefully and choose your adjectives carefully.
Always be clam. No one likes a fuss. So much so doctors have called me too stoic. And well, they taught me that one so that is that. To the point I can be in significant pain and not express it. Because in no way do I think doing so gets me anywhere. But obviously doctors expect pain behaviours of some sort. Of course, with chronic pain we mask pain- a lot. I have taken that to a whole new level. And it has not served me well.
So I had to learn to express myself but not too much. Get my point across but in such a way that they didn’t think I was exaggerating. But not downplay it too much or they wouldn’t think I was in any pain at all. Or that symptom was nothing at all.
I have fried my hand in a deep fryer when I was in my 20’s and not received pain killers because I didn’t make a fuss. Not recommended because you have to do stretches so it heals right. And other things. Worse things.
Brush it off, shake it off
Sometimes when you combine these things I get the whole disbelief thing. Because I waited to go to the doctor. And waited and waited. And then told them weeks and weeks later. And was stoic like it didn’t concern me. But it did. And they naturally brushed it off. Maybe didn’t make note of it at all. No tests or anything. Just migraines. Just fibromyalgia. And this is the consequences here.
Some things were ignored that became quite apparent later. Serious things I now have been diagnosed with but that diagnosis took a lot more time.
Some things were ignored that I wonder about to this day and never mention because that doctor brushed it off, never made note of it and never tested for whatever it could have been. So, when something similar happens I wonder. But have no history to show for it. So- meh. I shrug it off.
Consequences
- Not trusting yourself and your symptoms
- Not expressing your pain and being too stoic so as to not ‘make a fuss’, ‘be weak’, or ‘exaggerate’.
- Holding of on going to the doctor or ER too long for something potentially serious.
- Failing to mention symptoms altogether
- If they brush you off you then ignore potentially important symptoms instead of asking they investigate them.
Learning to advocate for yourself
This list is for me more so for anyone else. Seriously, I need step by step instructions on developing ways to advocate for myself. And stick to them. Because I just downplay things all the time.
- Write it down. All the time. At the time. And then bring that list of concerns with you. One step I always forget right there. Stick to the key issues at hand. I never bring in too many concerns. Time is of the essence.
- Do some research into your condition if you need to. Into treatment options. Medication options. Look at risks and benefits.
- Bring support if you need it. A friend, family member or significant other. If you feel like you need the support or feel overwhelmed or have problems remembering due to brain fog.
- Ask questions or for clarity if you need it. Something I sometimes forget to do because I get tired by the time I get there and just want to then get out of there. Sometimes I run through a potential conversation prior and that helps.
- Make sure you understand all the risks and benefits of anything that is recommended to you.
- Keep a journal of your symptoms if you need to track them. I do right now so that I can follow my treatment.
- Keep a planner and reminders for your appointments. On your phone or physically. I do both now. A planner helps because I can keep notes about that appointment or the upcoming appointment in it.
- Sometimes advocating for ourselves means getting a second opinion.
- Sometimes it means knowing when we are not being listened to and seeking a new medical professional.
Chronically Nikki 
Truly a human problem, even a human labyrinth… If only men and/or women could listen to each other and speak with genuine kindness and fairness, we wouldn’t be in this situation. But we’re in it up to here.
Our pain, suffering and tears are invisible to other people until it becomes credible. Credibility is the key word. As sensitive beings, which point do we have to reach to become credible in the eyes of other people? Do we need huge fireworks, tremendous earthquakes, or even planetary collisions to draw our life/suffering stories to become credible? So, barely edible, tell stories? Or almost real life paths?
Yes, we, with your pains, are often difficult to follow on the many paths of our pain or illnesses and may avoid making too much of what happens to us. Yes, we need to. But, in doing so, engaging ourselves in a more resilient way, would other people facing us, ignorant of what’s happening to us, try to fully listen to our experience of pain with compassion? Resilience and compassion are useful tools for more advanced human communication and, above that, understanding. But it needs time and will. Are we able to sign for that?
Neglecting the other people in who they are and what they experience leads to a lie : without will and openness, there is no kindness and compassion. Are we, then, both those who suffer and those who help, all capable of questioning ourselves?
Thank you, Nikki, for sharing your story.
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