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This post is part 4 in the 5 Keys to Adaptability for Chronic Illness Series. You can read part 1 here, part 2 here and part 3 here.

Disclaimer: While I offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.

For my full disclaimer policy, go here.

Do you ever feel lonely or isolated due to your chronic illness?

You’re not alone, my spoonie friend!

Living with chronic illness and pain can be so isolating since oftentimes we have to miss out on activities or may even be home or bed-bound.

That’s why one of the 5 major keys to adaptability is self-advocacy for chronic illness.

Self-advocacy is an indispensable tool that can help those with chronic illness take back their lives and feel empowered in their health journey.

In today’s post, I’m sharing a beginner’s guide to self-advocacy for chronic illness to help you gain valuable tools and tips to start using right away.

Let’s get to it!

This beginner's guide provides you with the tools you need to understand and utilize self-advocacy for chronic illness. Get started today!

How to Self-Advocate in 5 Steps

  • Understand Your Diagnosis

When you are diagnosed with a chronic illness, it can be overwhelming and confusing to understand what it means for your future. 

It’s important to take the time to educate yourself on the diagnosis and its potential treatment options. This is the first step to self-advocacy for chronic illness.

You should also discuss your diagnosis with your doctor or healthcare provider. They can provide you with more information, answer any questions you may have, and provide resources to help you manage your condition

It’s important to understand what it means to live with a chronic illness and to find the right balance of lifestyle changes and medical treatments that work for you.

While understanding your chronic illness is a complex undertaking, there are many resources available to help you navigate this process. 

Depending on your diagnosis, there may be classes, workshops, support groups, or online resources that can provide you with more information and an understanding of the condition.

It’s so important to find resources that are reliable and based on evidence-based medical knowledge so that you can make informed decisions. 

Additionally, building relationships with specialists and healthcare teams can help to understand your diagnosis and create a tailored healthcare plan. 

Talking to other people living with a chronic illness can also be beneficial, as they understand the experience and can share personal tips.

Finally, researching and being open to learning can help to give you an informed understanding of your diagnosis.

  • Take Control of Your Health Care

Living with chronic illness and/or pain can certainly take its toll on your emotional health and well-being. Those who are chronically ill are at an increased risk of developing depression, so learning coping skills to help maintain emotional wellness is recommended.

Physical symptoms from general illness, as well as chronic illness and pain, have also been tied to increased levels of stress, so practices that help calm the nervous system and de-escalate the flight, fight, freeze, or fawn response by helping to “turn off” the amygdala – the part of the brain responsible for creating these responses – which disrupts the stress response can be extremely helpful.

One of my favorite techniques for dealing with the stress of all sorts is EFT Tapping (Emotional Freedom Technique). This is a practice based on the energy meridians of Chinese Medicine and has been used to help people deal with things like anxiety, PTSD, phobias, chronic illness, depression, and more. I wrote a whole post about using EFT for chronic illness here, and you can even download a free guide here to help you get started today!

And don’t discount the benefits of seeking professional help if needed. There is no shame in needing some extra support, and therapists, counselors, and coaches can all help you learn more about what emotional wellness activities might be best for you.

  • Gather Your Resources and Support Network

Having the right resources and support for your health and well-being will broaden your understanding of your healthcare needs and allow you to take an active role in your care. By fully utilizing the benefits of self-advocacy for chronic illness, you’ll be able to improve your overall health and quality of life

One thing you can do to help with this goal is to create a network of people to consult and rely on for medical advice and emotional support

Reach out to doctors, nurses, nutritionists, coaches, counselors, and other health care professionals to provide guidance. 

Additionally, don’t forget to check your local resources such as hospitals, clinics, libraries, and health information centers. They can all offer valuable information that can help you make informed decisions. 

With the right resources and support, you are one step closer to learning to thrive through chronic illness.

Also, don’t forget that you can reach out to online health communities for advice and support.

Consider joining forums and groups dedicated to your specific health concerns and experience the strength of a community and its ability to understand and empathize with one another. 

These groups can be great resources for research, advice, and virtual encouragement. 

You can also use online resources that provide self-care tips and activities, such as mindfulness meditation or yoga routines. 

When it comes to taking care of yourself, don’t be afraid to ask for help and explore the wide variety of resources available.

This beginner's guide provides you with the tools you need to understand and utilize self-advocacy for chronic illness. Get started today!
  • Stay Informed with the Latest Research About Your Chronic Illness

With the amount of knowledge available online, finding reputable sources can be a challenging and time-consuming task.

It’s important to note that information on the internet may not always be accurate and up-to-date

To make sure you’re staying informed, it’s best to seek out trusted sources such as academic journals, scientific studies, and medical associations

Doing your research allows you to stay ahead of the latest findings and have a greater understanding of your chronic illness. With this knowledge, you can take a more active role in managing your health and enjoy a better quality of life.

Finding quality sources is only half the battle — it’s even more crucial to put them to use

Keeping records of the information you find, such as summaries of relevant studies, the contact information of experts, and other data that might be relevant can provide a helpful reference if you need to look up a fact or statistic quickly. 

Staying organized with a notebook or file system can help you quickly and easily find the information you need and keep track of any new developments. 

Additionally, attending support groups for your chronic illness can offer insight into the most up-to-date treatments, as well as provide moral support and connect you with a community of people experiencing similar circumstances.

  • Speak Out and Share Your Story

Having a chronic illness can be an isolating experience. It’s important to speak out and share your story to connect with others in a similar situation and also to inspire hope for those who are newly diagnosed.

For example, if you have an autoimmune disease, you can write about your struggles and triumphs, and how you’ve been able to live with and manage the condition. It doesn’t have to be a long piece; just an honest account of your experience. 

Sharing your story is a huge part of self-advocacy for chronic illness as it allows you to humanize your condition. You’ll also gain confidence and determination to keep going when you see how your story can affect others.

You may also be doing some valuable research by providing doctors and researchers with insights and perspectives to build upon. Consider it a way to use your experience to provide hope and support to others in need.

By being open and sharing your story, you can also help fill a gap in the medical community – many physicians report difficulty in recommending treatments for chronic illness because there’s too little information on real-life experiences. 

Your story will help make an impact and ensure that the latest treatments and research are tailored to the unique needs of individuals, rather than a one-size-fits-all approach. 

Reaching out and speaking up about your experience can help create real change.

Self-advocacy is a powerful tool for managing the challenges of chronic illness and gaining control over the day-to-day decisions about your health.

This beginner's guide provides you with the tools you need to understand and utilize self-advocacy for chronic illness. Get started today!

By understanding your diagnosis, taking control of your healthcare, gathering resources and a support network, staying informed with the latest research, and speaking out and sharing your story, you can navigate the journey of chronic illness with greater confidence.

If you have a chronic illness, self-advocacy is a necessary tool to help you manage your symptoms and stay in control of your health journey. 

Share this article with someone you know who is dealing with chronic illness and encourage them to find their self-advocacy voice. Just click on the buttons on the left-hand side of this page or pin the images below to Pinterest!


May your flares be few and your spoons be plenty,

April Smith, founder and coach at The Thriving Spoonie, a compassionate and empowering brand for those with chronic illness. A smiling cisgender woman with short wavy brown hair, green eyes, and dressed in a blue denim shirt, confidently faces the camera, smiling. The image is overlaid in the top right area with her name in black script.
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