By Alex Wilcock
Disclaimer: This advice is from personal experience, and not a medical professional.
Part 1 – How to Self-Advocate
Taking a pill from a pill box. Image via Unsplash.
If you present as a woman, it’s quite likely you’ve had an experience where your pain has not been taken seriously – either by friends, family, co-workers, employers, or even those in the medical field. The denial of your experience of pain is not unique – studies show that women’s pain is not treated the same as men’s, and that’s not even getting into the queer experiences of pain. In this series, focused on health, we hope to shed light on the history of women and medicine, and empower you with knowledge, so that you can engage with professionals and get the help you need.
Given the current situation, it seems as good a time as any to start this series with one of the most important tools you can take into the doctor’s room – self-advocacy. It is important to learn how to stand up for yourself and say to people ‘This is not normal. This is not okay. I know my body, and I need you to listen to me and help me’ – and continue to say it, even if they don’t listen.
Step 1 – Self-Belief
The first thing to know about your body – no one knows your body like you do. That is a fact. While medical professionals can use their expertise to give you guidance and information on what exactly might be going on in the complicated flesh prison you call home, at the end of the day, only you know if something is off. Your pain is not imaginary. Your experience is real, it is valid, and pain and discomfort is not a ‘norm’ that everyone else but you can handle. It is important to hear what your body is saying to you, and understand that if you think something is off, it probably is. Believe in yourself. You may not be an expert in medicine, but you are the expert in you. A useful tip is to keep a diary of your symptoms, to prove to yourself that it is really happening, and to take with you into appointments while you chat with your doctor.
Step 2 – Knowledge is Power
Once you know what is going on, it’s time to do some research. If you’re the sort of person who gets anxious, be careful with this step – it can definitely make you spiral. Regardless, having an idea of what your symptoms can mean, and the different causes can be incredibly beneficial, and help you understand what different pains can mean. In the end, doctors only get 15 to 30 minutes with you. You get your entire life in your body, and you know it’s ins and outs better than anyone. You also are more likely to know what runs in your family. Take this knowledge, and use it to see who else in the world is going through what you are. It may help you understand what’s happening, and maybe even help you connect to some people who know how tough it is.
Step 3 – People in Your Corner
Unfortunately, because of the patriarchy and because the world is (despite improvements) an incredibly unjust place, often one voice is just not enough. Talk to the people who love you – guys, gals, non-binary pals, people of different ethnic and racial backgrounds – and find your allies. Once you find your people, tell them about your appointments and – if you can – take your nearest and dearest in with you. When you’re in pain, it’s difficult to reason and comprehend information, and having an advocate in the room will ensure that they can do it for you, if you’re too unwell to advocate for yourself. In the end, the more people you have in your corner backing you, the better your odds are of being listened to. It will also help you feel less alone – and isn’t that something to hang onto when we can?
Step 4 – Don’t Give Up
The reality is, sometimes people just won’t believe you. You can come in with all the information, you can come in with evidence, you can come in with advocates, but sometimes people will disregard you and your feelings and your proof. It is capital-B-Bad. Well, it’s worse than that, really. And I’m really sorry for those that it happens to. I’ve been there, and it’s one of the worst feelings I’ve ever had to live through.
Try not to let it damage your faith – there are people out there who will help you, you may just need to work a little harder to find them. You have people who love and support you, and who see your truth. You know yourself better than anyone, and if it feels wrong then it almost certainly is wrong – don’t doubt yourself. Educate yourself, advocate for yourself, and keep working until you find someone who you can trust. When you do, it will be worth it.
Resources:
https://mentalhealthrecovery.com/info-center/ten-steps-to-being-an-effective-self-advocate/
https://strokefoundation.org.au/Blog/2015/05/20/Self-advocacy-for-beginners