How to Create a Chronic Illness Management Plan


Sometimes when our pain or disease throws us a curveball, it can feel incredibly overwhelming. We can feel anxious and afraid. We often feel isolated in our pain and symptoms, even though we may be surrounded by loved ones.

All of those feelings are normal. Partly, we feel them because we are experiencing more change. Changes in disease symptoms often result in changing how we need to manage our daily life. Change can then cause the grief process to start again.

My pain has escalated to a new level over recent weeks. I know that’s going to happen as my disease progresses. It’s my reality. I can curl up in a ball and give up, or I can take some control over my circumstances.

Like so many of us living with chronic disease, there are often no solutions when my rare disease progresses, other than making further life changes to accommodate the worsening disability.

I’m a born leader, planner and organizer, so when changes occur, I start automatically thinking about what I can do to accommodate those changes. I was born feet first and my family always joked that I arrived ready for action. That’s not such a bad thing given my life’s circumstances.

If you are finding that your disease is worsening and there are little treatment options available, I’d really encourage you to take time to start or review your Chronic Disease Management Plan. If nothing else, it will give you a sense of taking some control in a situation that can feel like a ship in a storm without a captain. It’s your life, you can be the Captain.

Your Chronic Disease Management Plan can include whatever you want but as a starting point some key areas to consider are:

1) Activities – This includes what you can do, what do you need help with, and what can’t you do.

2) Environment – Is there anything in your home that is impacting your pain and/or disease and requires changing (i.e. position of items in cupboards or more major household changes)?

3) Rest periods – How often do you need them and when? What impedes you having them and what can you do to fix that?

4) Medical reviews – Are you happy with your current medical team? Do you need to make any changes? Are you happy with how often you see them? Do you need to increase or reduce your number of appointments?

5) Leisure -What are the things that help you relax? How can you make sure you do more of these things?

6) Family/Friends – Setting boundaries. How often can you cope with visitors, etc.? Do you need to remove toxic relationships?

7) Goals – Are there things you really want to achieve (e.g. getting out for coffee or maybe a travel goal). How will you do that? What support will you need?

You get the idea. Hopefully these suggestions will get you started or help you update your existing plan. You’ll definitely come up with other things as you start thinking about your own life.

I’m taking time this week to re-evaluate my activities. I’m reviewing what I do now, what I can do differently, and asking myself, “What shouldn’t I be doing at all?” That last question will be the hardest as I love what I’m doing now, but I know I have to find more time to rest my body and my mind.

If you start a Chronic Disease Management Plan, it might take a little while to work through the review process, but I know it will be worth it in the end.

We want to hear your story. Become a Mighty contributor here.

Getty Images via designer491


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

the author with "rare" colors painted on her face for rare disease day

If You're Rare, Here's What I Want You to Remember This Rare Disease Day

Statistics show there are around 30 million Europeans living with a rare disease. Most of them are caused by a genetic deficiency, while some are caused by environmental factors. Now, let that properly sink in for a second. That is only within Europe. Worldwide, there are so many of us, chances are you know someone [...]
the author with her nephew who has BPES

What It's Like When Rare Disease Causes Bullying

In honor of Rare Disease Day on February 28th, I’d like to introduce you to one of the great loves of my life, my nephew Hunter, or as I affectionately call him, Shrimp. Both Hunter and my sister Amy have a very rare genetic condition called blepharophimosis, ptosis, and epicanthus inversus syndrome (BPES). In fact, it [...]
neena's two sons running in the grass with superhero capes

The Truth About Living With a Rare Disease

My most troubling memory from my childhood is perhaps that of a little girl getting a prosthetic fitting. I was 15 at the time and battling my own demons. I had just recovered from extensive corrective surgery and was at the orthotics office to get a new pair of calipers (leg braces). I detested the [...]

The 5 Ways I've Found Freedom With Being Chronically Ill

A friend recently posted a question in her Facebook group, Freedom to Choose, about ways to gain freedom in life, so you can choose how you want to live it. My response was one word: acceptance. Of course I had to follow through with a short sentence, since I really can’t stop at one word. [...]