Self-Advocacy In Daily Life With Chronic Illness
There are many aspects of our lives that can hold us back from living well with chronic illness that have nothing to do with medical care.
This is one of the most interesting and empowering lessons that I have learned from my experience with chronic illness and as a health coach.
Frequently, my clients have something that is standing in the way of taking the next step to wellness. Before we even start on setting a wellness goal or practice, they need to get a big stressor managed. This might be something that no longer works in their life with their current symptoms or challenges. Once this stressor is addressed, they have more space in their lives and feel more ready to dive into other areas of their lifestyle that could position them for better health.
While these stressors are unique to the individual, I would like to share some of the main considerations that might help you find your path the Chronic Wellness.
The best place to start is by taking an integrative approach to your situation.
This requires examining the aspects of your life that might be holding you back, causing you stress, taking your energy, or hindering you from taking better care of yourself and listening to your body.
For 10 areas of your life to consider, check out the assessment on Day 2 of my free Chronic Wellness Challenge.
Once you have an idea of the main areas in your life that might need some adjustment, consider what you can do to feel more ease in your daily life.
Here are 3 tips for self-advocacy in your daily life that can help you live well with your chronic illness.
1. Prioritize & Simplify
If you have been living with chronic illness for a while, you are likely well aware of the concept that there is only so much any of us can do in a day.
It is a bit of stating the obvious. But, many of us continually need the reminder of this concept that is commonly known as the “Spoonie Theory” or body budget. For many of us, our bodies and minds are dealing with so much related to our chronic illness that much of our body budget is spent before we even get out of bed in the morning. Our immune system is working harder than the average person’s, we feel more tired, and it takes more of our body budget to show up for daily life and responsibilities.
And, our body budgets can be unpredictable. Some days you have a bigger budget. And, some days you don’t. Some days might require you to rest in order to save up for a big event. And, you might need to rest for several days after a big body budget expenditure.
What I have learned from my own experience and with working with other women with limited body budgets is that we need to prioritize so that we are spending our budget on the things that matter most, and not spending our body budget elsewhere. While it can be disappointing and frustrating to recognize our body budget limitations, realizing that we are empowered to make changes to our lifestyle can significantly impact our quality of life with chronic illness.
Considering what our priorities are can be an important strategy to gain clarity on where we spend our energy when we have it. It may also lead us to making important changes in our day-to-day responsibilities and expectations if we are consistently stretched too far. It can lead us to living a life with chronic illness that is better aligned with our reality. Once we prioritize, it typically becomes apparent that we need to simplify our lifestyle by letting something go (or simply rescheduling it).
Of course, it can be difficult to accept that you won’t get to do everything you want to do. But, sometimes your body is not willing to negotiate. When this happens, prioritizing and simplifying may help to better align your lifestyle with the needs of your chronic illness.
2. delegate
Regardless of how much you prioritize and simplify, you will likely still have more on your plate than your body can handle.
For many of us, we need to delegate some of our obligations because we are not physically able to do *all* the things we want or need to do. This is when delegating tasks that need to be done, but don't necessarily need to be done by you, can give you the space to focus on your health.
This could look like asking friends or family for support with these tasks, or by paying a person or service to take a task off your hands - like housekeeping, cooking, errands, childcare, etc. This will look different for each of us based on our own life situation, what can be delegated, and what resources we have available.
Delegating is crucial for so many of us with chronic illness. When we can clear our plate a bit, we can focus more on what we need to manage our chronic illness or promote healing where we can.
3. Creative thinking
When resources are a challenge, it can require some creative thinking to get the support you need.
We are all in different situations with different access to practical support. This is upsetting, but it is the reality when health expenses drain bank accounts and when those who are chronically ill are no longer able to work in a way that provides a full salary and benefits.
However, I am continually blown away by the tenacity of my clients and others in the chronic illness community in how they navigate these realities and get the practical support that they need. This might mean relying on friends, family, community, social workers, non-profits, etc. and/or finding the right experts and advocates in employment, benefits and insurance matters that can make or break financial resources. This can be exhausting when you are already stretched thin. Personally, I think it is awful that this is how things work.
I support my clients as they find the ways to obtain the practical support that makes sense for them. Of course, I am happy to support them in this effort with referrals and resources the best that I can as they determine what they need and how to get it.
However, the lesson that I have learned as a health coach and as a chronic illness thriver is that no one knows what you can delegate, what you want outside help with, and what works best for you - better than you.
Want to dig deeper?
For more information on how you can prioritize, simplify and delegate, check out the worksheets in my free Chronic Wellness Challenge.
What is something that you are spending your body budget on that could be outsourced, delegated or let go?
How could this open up your body budget? What would this make possible?
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