Every person I know who has a chronic illness or a disability has not been listened to by their doctors.
Hell, every female-identifying person I know has had their experiences ignored by someone in a medical field. “The tests have come back negative, there’s nothing wrong with you”. “Just keep taking paracetamol”. “Maybe you should up your exercise?”. Unfortunately, I am well-versed in this. But it’s not all bad news. The fact that I have jumped through these hoops more times than I can count has meant I have come out of this a stubborn woman, who has learnt the importance of self-advocating, and won’t stand for any person having their symptoms ignored. I’ve gone through the bullshit and now you don’t have to.
Let me give you a glimpse into my medical history. Since I was a child, I’ve been asthmatic with a peanut allergy. I’ve noticed that as these conditions are something most people have encountered before and it’s been on my record since I was in nappies, it’s generally taken seriously. When I was nineteen, I was diagnosed with chronic anxiety, then with polycystic ovarian syndrome (a hormone condition also called PCOS) at the age of twenty-four. It took over a year for me to get my anxiety diagnosis and three years for me to get my PCOS diagnosis. The feeling of knowing that there is something wrong with you but no-one is listening is soul shattering and demoralising. Regarding my PCOS, I got into a horrible cycle with my health of going to the doctor with a problem, getting dismissed because ‘they couldn’t find anything wrong’, sitting in pain for weeks, and then going back to the doctor with my problem. It’s only when I started to advocate for myself, that things started to change.
‘Okay Rosie, you’ve thrown the phrase self-advocating around a few times now, as well as whittling on about your conditions. What does self-advocating actually mean?’
To directly quote Disability Rights UK, “Self-advocacy is the ability to speak-up for yourself and the things that are important to you.” It’s something that we should all use in our day to day life, work, and education, but especially regarding our health and wellbeing. Advocating for yourself in your doctor’s office is about respecting your body and speaking up for it, with the intention of having your experience listened to and being taken seriously. It’s about going out of your comfort zone to get the respect and treatment you deserve. At first, it is terrifying. But every time you turn up and advocate for yourself, it gets easier and easier. In the three years it took for me to finally get diagnosed with PCOS, advocating for myself is what turned it all around and got me a diagnosis. I don’t want anyone else to wait years for a diagnosis or to feel like their experiences aren’t being taken seriously. So let me tell you the five ways to be the best self-advocate you can.
1. Trust your body
Bodies. It’s why we end up at the doctor’s, talking about our symptoms and conditions. Tests and scans and x-rays are all vital to our wellbeing and diagnosing conditions, but we should not forget the importance of trusting your own body. For me, this is the first step in self-advocacy. When I was struggling to get diagnosed with anxiety, the doctor said that it would all go away when my University exams were done. When all of my Crohn’s and Colitis tests came back negative, my doctors told me that there was nothing wrong with me and to stop overreacting over ‘cramps’. But I knew that my anxiety was more than stress, I knew that my pain was real, I knew that it was more than what he told me. It is the knowing, the trusting of your body, trusting your own experience, that is the springboard to advocating for yourself.
2. Write everything down, and bring it all with you
One doctor told me that the symptoms I was experiencing were just period pains or birth control side effects, and I should be used to them by now. So, for three months, I wrote down everything just to prove him wrong. We love a petty queen. I noted what I ate, when I went to the toilet, and how I slept. I charted my pain, exactly measured my swelling, standardised my brain fog. I recorded it all, from the descriptions of each stabbing spasm, to noting exactly what time my leg would go numb. Photos, pictures, sketches, scrawlings. For three months, across my bullet journal and diary, I noted everything about my life and health. Then, I rocked up at my next doctor’s appointment, notebooks in hand, and said “Doctor, I know I have a problem”.
It didn’t matter that I had told him this three months before. Now I had brought him evidence, a pattern to look at, a physicalization of my experience. He swiftly said “hmm, I think you may have a problem here. Let’s run some tests…” Oh! What a surprise! I could not see that coming at all! Sigh. I’m sorry, it’s been a few years since this experience but I am still a little salty about it. Anyway… Write it all down. Bring it with you. Ignore that little voice that says ‘this might be a little bit excessive’. It’s not excessive: it’s taking control of your condition. I also found that having something to physically hold onto in my early days of self-advocacy, something to point at and explain, did wonders at building my confidence. You may feel nervous at discussing a condition you can’t always see, but notes are a tool, a physicalization of the condition, the evidence some doctors need.
3. Be respectful but never settle
It is no lie that medical staff are overworked, under-paid, and mistreated by our government (I’m based in the UK but if anyone else in the world reads this and relates – if the shoe fits!). Medical professionals are tight on time, they have processes they need to follow, and there are waiting lists for things like tests and specialist care. Not everything can be done immediately; understanding and respecting that is all part of advocating for yourself. You need to be respectful, but never settle. If your doctor asks you to speak to a specialist, ask to be referred or for assistance in finding one. If you are told you need a test, get that in writing and book it straight away. If you are told to wait it out and come back at a later date, make sure you arrange that later date then and there. Never leave an appointment without knowing what the next step is.
4. Do not be afraid to ask for a different doctor
Whether this is for a second opinion or if you feel you need a completely different doctor, do not be afraid to request a different one. Most doctors and medical staff are incredible folks who do their best to help everyone. But like everyone in the world, from lawyers to actors, teachers to bar staff, there will be some people who have bias. And I’m not just talking about medical bias here – I’m talking racism, homophobia, fatphobia, misogyny – boy oh boy does the list go on. Sometimes, you may come across a medical professional who is as sound as a bell, but their medical education was rife with bias.
The moment you start to wonder if a medical professional is being biased against you and this may affect your treatment, request a different doctor. For example, I’ve had many a male doctor tell me my symptoms are all part of ‘being a woman’! You know, just girly things! So, I requested a doctor who was assigned female at birth. At my first appointment with her, she knew that what I was going through was not just ‘being a woman’. Even if you feel your doctor is un-biased towards you, you may feel their assistance has run its course. If this is the case, ask for another doctor. You need to put your health above anything else in this world.
5. Apply Pressure
If there is only one thing that you take away from this post, I hope it is this point. Never stop applying pressure. I don’t mean applying pressure in an angry or disruptive way; that’s detrimental and disrespectful. To apply pressure means to never let your care slide. I went through months of having blood tests, colonoscopies, and general gross tests to find out what was wrong with me and just kept going in circles. The final straw was when I was lying on the colonoscopy table, the doctor looked at me and said “There’s absolutely nothing wrong with you, this was a waste of time.” So I did what any sensible person would – I sat on a bench, sobbed my eyes out, and left the hospital a snotty, mascara dripping mess. It would have been so easy to just accept that as gospel, and think ‘well, I’ll just deal with it then.’ But when the waterworks had stopped, I picked up my phone, and called my doctor.
I told her everything and definitively said “I would like some more tests”. When she said we had gone through almost every avenue, I asked what we hadn’t tested for. “Well, just allergies and hormone levels, but I don’t think it’s either of them.” Since the beginning of my symptoms, I had known it wasn’t a stomach issue, it was too cyclical to be that. I had asked for hormone tests multiple times, but was always told “it’s much more likely to be this: insert terrifying list of conditions”. So, I applied pressure. “I’d like you to test my hormones.” “Well, I’m not sure that would amount to anything.” “Please. Test my hormone levels.” “Fine. But don’t expect any results.” And what do you know? The tests showed that I have a hormone deficiency. Wild. It was only because I stood my ground, applied pressure, and advocated for myself, that we managed to get the ball rolling on diagnosis. It is because I did not take no for an answer that I am here, with my diagnosis, no longer living in the dark.
I will admit, it’s tiring. Advocating for yourself is tiring and stressful and anxiety-inducing. People with disabilities and chronic illnesses have to jump through metaphorical hoops in every aspect of life; you’d think we’d be able to get some rest when it comes to the medical field. But, that’s not the way it works. We’ve got to work that extra bit harder and advocate for ourselves to get the treatment and diagnosis we need and deserve. Not only is this caring for ourselves, we are also raising the voices for those who cannot yet self-advocate for whatever reason that may be.
Advocating for myself has been tiring, scary, and stressful. But it’s also been the most important thing I have done for my health and life. Always trust yourself. Always advocate for you.
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Educate & Donate: Stephen Lawrence Day | Stonewall UK | Survivor’s Trust | Mind |
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