What is Self Advocacy? How to Advocate for Yourself with a Chronic Illness

Have you seen the term ‘self advocacy’ a lot lately, especially in relation to healthcare? Me too. But what is self advocacy? And how does it relate to chronic illness? 

How many doctors’ appointments have you been too and felt dismissed, gaslit or forced to take medication? Several times, right?

Unfortunately, a lot of us with a chronic illness have had ‘not so great’ experiences with our doctors.

But we haven’t spoken up because we thought we couldn’t or didn’t know how to.

There’s no way things should be like that. You’re allowed to ask questions and insist on getting the best quality of care.

Which is why it’s important to advocate for yourself with a chronic illness.

So, let me break it down for you and give you some helpful tips.

WHAT IS SELF ADVOCACY?

Self advocacy basically means speaking up for yourself about things that are important to you.

It also means that you can communicate your needs and speak up for your rights and choices that influence your life.

Although it may sound pushy, or a little forward, it’s really not.

Advocating for yourself means you’re assertive, but willing to listen and collaborate with others to resolve issues or meet a common goal.

WHY IS IT IMPORTANT TO ADVOCATE FOR YOURSELF?

Prior to knowing what the hell self advocacy was, I was far from confident in situations concerning doctors.

Even though there were many times where I didn’t agree with doctors, I was so scared to speak up for myself. So I just used to go along with whatever they said.

But after a while I realised that wasn’t serving me or making my chronic pain any easier to manage.

I was in more pain, and more miserable than I had ever been, so clearly something wasn’t working.

As someone with an invisible illness, I know how difficult it can be when dealing with dismissive doctors. The ones who don’t want to work with you to make things easier. 

But no matter how hard it may be to deal with certain doctors, it’s really important to have the confidence to advocate for yourself, otherwise your situation may never get better. 

Now don’t get me wrong, it’s easier said than done!

To this day I’m a bag of nerves when I have a doctor’s appointment approaching. I’m pretty shy and I hate confrontation, so the idea of being firm about what I need makes me cringe.

Especially if I know I’m dealing with a doctor that isn’t so receptive or open to patients being vocal. 

But I guess it has to be done.

Advocating for yourself when you have a chronic illness is important because:

• You know your body the best and know what is working/not working
• You’ll have more control over situations concerning your health
• You care most about yourself, your health and seeking the right treatment for your condition
• You‘re able to speak up when something doesn’t feel right 
• The healthcare system doesn’t always support patients taking charge of their health and has a ‘do as I say’ approach
• Your doctor doesn’t know everything

HOW DO YOU ADVOCATE FOR YOURSELF WITH A CHRONIC ILLNESS?

After so many years of dealing with different doctors and specialists, I’ve truly learned how to advocate for myself.

It’s still challenging, especially as I have an invisible illness that isn’t so common. But I’ve seen how things have improved since I started speaking up more for my health. 

So here are some tips that will help you advocate for yourself with a chronic illness. I hope you find them helpful.

1- DO YOUR RESEARCH

I can’t count the number of appointments I’ve been to where the doctor either prescribed a medication I didn’t want to take, or refused to prescribe me anything at all to manage my pain.

Both are just as frustrating as each other. This is why it’s useful to do your own research. 

I know doctors usually tell us to stay away from the internet, but doing your own research (using reliable sources) will help you better understand medications, conditions and symptoms.

Meaning you’ll enter discussions with doctors feeling a lot more educated and well equipped to ask questions and make suggestions.

When doing your own research, be careful as there is a lot of fake and harmful information on the internet.

I try to stick to trusted health organisations (within my country) and sites for information surrounding health.

2- WRITE DOWN YOUR QUESTIONS

Living with chronic pain means brain fog is a constant in my day-to-day life, which isn’t great, particularly at appointments.

How many times have you left a doctor’s appointment, and suddenly realised you forgot to ask a really important question?

That’s why it’s helpful to write all of your questions and concerns prior to your appointment.

Prior to your appointments, get your notebook or planner and jot everything down. If you need some help with questions to ask your doctor, check out this post.

3-  BRING SOMEONE WITH YOU TO APPOINTMENTS 

Take a friend, family member or someone you trust with you to your appointments. Not only will it be comforting to have someone with you at your appointments.

They can also help you feel more confident about speaking up and advocating for yourself.

Having someone with you can also prompt your doctor to change their tune. Things they may have done wrong when it was just the two of you may be a lot different if there’s a spectator.

I’ve experienced this so many times. 

I had a really important appointment recently where my doctor was acting like an asshole because I was asking him too many questions.

I had a follow up appointment which I brought my mum along too. Suddenly, he was the perfect doctor, happy and willing to answer every question without issue.

On one hand, it’s frustrating, and on the other it’s hilarious. Why does another person being present make you treat me properly?

It’s ridiculous if you ask me.

4- FIND A DOCTOR THAT SUITS YOU

I’ve seen so many doctors over the past 5 years. That’s because all doctors are different with different approaches, treatment style and attitudes.

So not every doctor will be the right fit for you.

A good doctor should listen to you, have open discussions about your options, and do their very best to provide you with the best possible care.

If you’re not getting that or feel uncomfortable with your doctor, you’re within your rights to ask for someone else who’s a better fit for you.

5- ASKED FOR A SECOND OPINION 

Advocating for yourself can also include asking for a second opinion. 

Sometimes you and your doctor may not share the same views or a specialist may provide you with a better level of care.

So don’t be afraid to ask for a second opinion from a different doctor or to see a specialist. 

ASK TO SEE A DIFFERENT DOCTOR 

As I previously mentioned, all doctors are different and can have different ideas and attitudes.

So if you and your doctor disagree or don’t see eye to eye on something, ask to see another doctor at your surgery to get their opinion. 

If you don’t trust that your doctor is doing all they can to help you, getting a second opinion can help you put your mind at ease, or confirm that it’s time to see someone new.

ASK TO BE REFERRED TO A SPECIALIST

I’ve suffered with chronic pain for over 5 years and I only received a ‘kind of’ diagnosis in the past few months. 

I have chronic pelvic pain and all my doctor could do is prescribe me strong medications that did nothing but give me horrible side effects.

So, I asked to be referred to a pain clinic or pelvic floor physio, who can actually help me manage my pain.

Certain chronic conditions can be really hard to diagnose and treat, and a lot of times it takes for a specialist to give you the best possible care.

If you feel like your doctor isn’t the best to help, ask to be referred to a specialist for your condition. 

They’ll be able to take a more in-depth look at your symptoms and concerns and hopefully help treat or manage your chronic condition a lot better.

6- TRACK YOUR SYMPTOMS

I keep track of all of my symptoms at all times. Whether it’s in my pain diary or in the notes on my phone.

Keeping track and documenting your symptoms will prove helpful for both you and your doctor.

It will help you keep a note of any triggers, changes, or improvements. But it will also be helpful for your doctor to understand your condition a little more and provide you with the right tools and treatment. 

So document all of your symptoms daily, whether it’s in your planner or on a piece of paper, and bring it with you to your appointments to discuss with your doctor.

7- FIND YOUR TRIBE

I recently joined Instagram (I know I’m stuck in the dark ages), where I share my experiences and tips about life with chronic pain.

To be honest, I was avoiding joining Instagram for so many reasons. The main one being that I thought people wouldn’t care about what I’ve gone through as someone with chronic pain.

I was so wrong! The chronic illness community on Instagram is awesome.

I’ve met some really amazing people and have come across so many great pages that make me feel supported and less alone. 

So, where possible, try to find your tribe.

A place with like-minded people going through similar experiences. Those you can talk to, learn from, inspire, or be inspired.

It doesn’t have to be Instagram either. There are some amazing Facebook groups, online forums and sites such as The Mighty, where you can find people you can relate to. 

8- YOUR OPINION MATTERS!

Let’s take a step back one more time and really ask ourselves again, what is self advocacy?

Of course, the above tips are ways to advocate for yourself, but one thing is missing...

Confidence!

Like I mentioned earlier, I’m a shy introvert who just so happens to have a chronic illness. It isn’t the best combination. 

I knew nothing about chronic pain or chronic illness until I experienced it myself.

So at the start of my journey, I wasn’t so confident or forthcoming with my opinions because I honestly felt they didn’t matter. 

But after becoming even more unwell, I knew it was time to build up my confidence and understand that I’m worthy of getting the best possible care, and so are you.

I know it’s easier said than done and it won’t happen overnight. But over time, using the tips above, you’ll feel more confident and realise you are your best advocate. 

I hope you can now answer the question ‘what is self advocacy?’ and hopefully you can use the tips to advocate for yourself with chronic illness.

What self advocacy tips would you add? Drop them in the comments below.

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