How to Empower Yourself with Chronic Illness Self-Management 13 min read

When I was first diagnosed with Idiopathic Intracranial Hypertension in 2018, I was so scared and overwhelmed that I was ready to hand the responsibility of the management of my chronic illness (and therefore, my life) over to my neurologist. Chronic illness self-management didn’t even seem like a possibility to me.

Despite the high probability of some pretty bad side effects, I decided to get on medication to try to keep my condition under control. I’m not typically a fan of heavy-duty pharmaceuticals (not that I don’t believe they have their place and are needed for some people – I just haven’t had success with them).

But the possibilities of severe complications, and being in more pain and more debilitated than I was already because of this condition seemed worth the risk. Unfortunately, my body didn’t agree with this plan, and after only a month on medication, it no longer became a sustainable treatment for me due to lowered appetite and the inability to keep whatever I managed to eat in my system.

At this point, my doctor basically wrote me off and so I did the same to him and decided to take matters into my own hands and learn the ins and outs of self-management for IIH, so I could empower myself to live well with this chronic illness.

In this post, I share the basics of chronic illness self-management, why it’s important, and some ideas to help you get started. Keep reading below to learn more! 👇‍

What is chronic illness self-management?

According to the Multiple Chronic Conditions Resource Center, “self-management is defined as the ability of the patient to deal with all that a chronic illness entails, including symptoms, treatment, physical and social consequences, and lifestyle changes”.

When I think about chronic illness self-management, I also consider the emotional and spiritual tolls living with chronic illness can take, and what I can do to support myself in these areas.

I consider chronic illness self-management a way to be an active participant in treating chronic illness, allowing us another way to avoid feeling like our illness is happening “to” us. Instead, by empowering ousrselves with self-management, we take a proactive approach to maintaining our overall wellness.

What happens if chronic pain & illness go unmanaged?

Consistent chronic pain and complications from chronic illness have been shown to lead to mental health problems like depression and anxiety. It can also impact your ability to work, have a social life, your relationships, and your ability to take care of yourself.

You might also experience sleep disturbances, changes in appetite, and a loss of purpose & self-worth. (psst – if this last part sounds like you, you might want to check out this post).

Benefits of chronic illness self-management

Self-management of chronic illnesses and conditions is often mentioned as a way to help people increase longevity and improve their quality of life.

It isn’t meant to replace the care and treatment you may receive from healthcare providers, medications, or therapists, but to work in partnership with this care so you can feel as good as possible.

Even the US Department of Health and Human Services recognizes the importance of self-management and lists it as one of their goals in helping people live well with chronic conditions.

Some benefits of learning and implementing chronic illness self-management techniques and tools  are:

• you can improve your sense of independence and self-sufficiency – even when you require help, knowing and asking for what you need is an empowering thing
• you may also be able to maintain and improve your quality of life through using a variety of modalities that are available to you
• it empowers you to be an active participant in the care and treatment of your chronic illness
• chronic illness self-management can also foster your ability to practice self-love and self-compassion
• you get to learn more about what works and what doesn’t – and discover things that provide you comfort and relief that medical & healthcare professionals may not suggest or ever consider

How I use self-management for chronic illness

When it comes to using self-management modalities for my own chronic illness, here are some things I’ve found helpful.

Remember, each of our bodies and conditions are unique, and what works for me may not work for you.

Here’s what I do for chronic illness self-magement:

• I have my own “pain scale”, and I used it to help me know when I can push through, and when I need to rest
• I’ve started adding more accessibility tools to my home, like supportive wedge pillows for sleeping, and a bamboo stool in the bathroom that i can use in or out of the shower on high fatigue days
• I’ve recently started purchasing pre-cut veggies to make snacktime and mealtime easier, since I enjoy cooking very much, but don’t always have the energy to do everything myself. While I do often get help from my husband, if I’m home alone, this empowers me with more options when I’m on my own or if I just want to be more self-sufficient
• I try not to overwhelm my schedule, and pre-plan rest time so I can try to minimize any fatigue that comes from being out and about.
• I make time for personal growth, self-care, and connecting with other spoonies who live with chronic conditions

Ideas for self-management of your chronic illness

Each of us has different experiences with chronic illness and pain, and therefore how we approach chronic illness self-management will be unique.

There are, however, some things that have been proven to help when getting started with self-management for chronic conditions:

• researching and learning about the science behind chronic pain to gain a better understanding of what is taking place in our bodies and minds
• keep track of our pain and symptoms, and how they affect our daily lives can give us insights into what our needs may be when it comes to chronic illness self-management
• these insights can then be used to help us develop a plan for coping with flare days and finding whatever relief we can through chronic illness self-management

Taking care of our emotional and mental wellness (with tools such as EFT Tapping) is also an important part of managing our well-being when living with a chronic illness.

Are you ready to get started with chronic illness self-management?

If you’ve made it this far, hopefully by now you see the benefit of adding some self-management to how you live with chronic illness.

And if you’re new to things like this, you may be feeling overwhelmed with how to get started. But have no fear – I’ve got you covered! Check out my Daily Routines Guide for Spoonies by filling out the form below.

May your flares be few and your spoons be plenty,