Chronic Illness Diagnosis: How to Advocate for one Fast
Bodies change with time. It’s a constant in our world that we can all count on. Lately, your body isn’t just changing though. It’s like there is a whole new set of rules and you can’t figure out what to do. It’s time to make an appointment and pursue a chronic illness diagnosis. You go to a doctor, and they dismiss your concerns. Is it all in your head? You’re feeling lost and not exactly sure what the next step is.
Below are some practical steps to take that can get you to a faster chronic illness diagnosis.
Time to Advocate for a Chronic Illness Diagnosis.
It’s time to approach this mystery in a whole new way. Experiencing the sudden onset of an illness can be hard enough to deal with on its own. You’re already trying to deal with the newness of the chronic illness.
Trying to convince others what you’re going through is very real can be tough. Convincing doctors can be tougher because they are supposed to help and be on your side.
When a doctor is not listening, there is a new set of obstacles to jump to be taken seriously and get a diagnosis. Let’s break it down into simple steps.
1. Write everything down. Yes. Everything.
[bctt tweet=”If you begin to keep a record of every symptom and bring it in for your doctor, they might be more willing to take you seriously.” username=”rachelPTB”]
Pick one of these symptom tracking methods:
- Find a symptom tracker to print. There’s a free downloadable one on this post. Just scroll down and claim it!
- You can also just download and edit the pdf on your computer to hold the data digitally.
- Take notes in a binder or spiral notebook. It helps to have one small and durable enough to track your symptoms even on the go. Slip it into a backpack or purse so you can write things down before you forget it.
- Open up a notes section in your phone to record everything.
Whichever method works best is fine. Just record every little detail. Things you don’t think are important or a big deal CAN actually be valuable information.
This will help because at the next appointment you don’t have to wonder how to explain your chronic illness to a doctor. It’ll be easier to advocate and ask to see a specialist for testing.
2. Research and gather as much information on your own as you can.
I know, there’s that joke about getting a cough, googling it, and then “realizing” you have lung cancer.
I get it. Everyone knows that you shouldn’t exactly google every symptom.
BUT HEAR ME OUT –
When you’re trying to advocate for a new chronic diagnosis it can help to try and understand what is happening. This can help you suggest testing from your doctor. It could also help suggest diagnoses your doctor hadn’t thought to look into.
Make sure all your research is coming from reputable websites. I like to stick to websites that end in .org or .edu because they are usually pretty reliable.
Ask yourself who wrote the information, and try to find where they got their credentials to be able to speak on the topic. It’s important you make sure the research you are doing is as accurate and informed as possible.
Remember that if you’re studying a medical condition, having one symptom does not mean you have that condition.
You are not a doctor and you should not self-diagnose.
Researching can help you to bring up ideas and engage in the diagnostic process with your health care provider.
Here are some resources to learn more about doing your own medical research on the internet:
3. Join online Chronic Illness communities and ask questions.
You can find an online community for just about anything. There is a space for chronically ill people in every corner of the internet.
I have plugged into a few Facebook groups and I am following some people on Instagram and TikTok who deal with chronic illness.
This is an invaluable resource because you can ask people about their diagnoses if you think you might have the same thing.
You can also just ask people for advice on how to continue in your process.
Not to mention, the support of connecting with people who have been where you are is extremely validating. Coping with a chronic illness can be overwhelming at any time, but it’s incredibly overwhelming at the onset when everything feels new and sometimes hopeless.
Asking those who have been through the diagnostic journey how they deal with chronic illness and depression – along with other mental health issues – can be extremely validating and necessary to keep striving toward an official diagnosis.
4. Ask someone you trust to come with you.
The power dynamic at the doctor’s office can feel too intimidating to get out everything you need to say to advocate for testing, specialists, new diagnostic ideas, etc.
Make sure you bring all your research and notes with you. Ask someone you trust to come with you.
Have a list of questions or statements ready and written down somewhere. This makes it easier to stay on topic of why you came to the appointment. It also helps to make sure you don’t forget to ask anything important that you were wanting to ask.
If you have cognitive symptoms ESPECIALLY- writing things down is extremely important so you don’t forget something.
Talk to whomever you bring beforehand about what you want to accomplish in the appointment. This will make it clear how they can help make sure it gets done. They might not even need to speak up, but their presence could help.
5. Ask to see specialists.
When you have a chronic illness onset, primary care physicians might not have an accurate understanding of your condition to diagnose and treat you.
It’s likely you will need a team of doctors working on your side anyway. Ask to see specialists!
When you get to a specialist make sure you:
- take notes in the appointment
- acquire paperwork from any testing ordered
- keep a record of what happens in each appointment.
Add everything to the binder of information you’re using to keep track of everything.
I’m personally a physical copies kind of gal. I keep a planner with me where I track my symptoms and have any relevant paperwork recorded.
If you prefer to do this electronically, all you need is a smartphone. There should be a free app out there where you can snap a picture of any paper and upload that to wherever you’re choosing to keep your info.
[bctt tweet=”Doctors rarely talk to one another, so it is imperative that you brief each doctor on everything that has happened in your medical journey so far, testing, symptoms, you name it. They all need to know.” username=”rachelPTB”]
It’s exhausting and can feel daunting, but you got this!
6. Do not give up on your chronic illness diagnosis.
The healthcare system is broken, and unfortunately, there are countless stories of people who have gotten diagnoses after over a decade of doctor appointments.
I know that is extremely discouraging so I’ll leave you with my last tip to hopefully get diagnosed sooner:
[bctt tweet=” Medical care is a service. Do not hesitate to go to a new Primary Care Physician or specialist until you are taken completely seriously. (If you’re fortunate enough to be able to switch doctors.)” username=”rachelPTB”]
If you are part of a minority group that is typically discriminated against, see if you can find a doctor who is part of the same group as you, or who has a ton of patients that are.
If you’d like more information, here is an article from UW Medicine with a few tips on advocating as POC or another discriminated-against group.
I understand that this is not something that everyone can do, but if you can, make sure to change doctors.
Here are some websites to visit if you’d like to learn more about discrimination in health care:
Looking for additional advocate help?
Advocating is overwhelming when you are already dealing with so many new symptoms. I’m making it easier for you with this free printable.
Print this out and tape it to a mirror or the fridge, put it in a binder, whatever helps you to remember to fill it out.
I hope you feel more directed and encouraged about advocating for yourself now.
Have a participation trophy for showing up for yourself during this medical journey! I wish you all the luck, and I hope you are able to find a chronic illness diagnosis soon.
Let’s connect in the comments!
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