chronic illness · chronic pain · invisible illness · spoonie · spoonie life

“How To Live Well With Chronic Pain & Illness” Educating Family & Friends On Your Condition/Illness

I’ve had a difficult time finding people and words out in the world who understand (or at least nearly understand) what I feel from day to day as someone who lives with a chronic invisible illness. I often scroll through blogs written by people with their own chronic illnesses and one day I came across a blog that talked about this book called “How To Live Well With Chronic Pain And Illness” by Toni Bernhard. The author of this blog wrote something about how this book has helped her cope and become more mindful in during her day to day life with a chronic illness. I decided to check it out. I bought a copy on Amazon and immediately dove in. Each page has something that strikes a chord with me. Each chapter provides new insight as well as much needed comfort and understanding. While the author of this book doesn’t live with the exact same illness that I do, she is able to connect with me so well because the emotions and situations that we face are nearly identical.

Each week, I will summarize a different chapter and provide the tips/advice/insight that I found most helpful. I hope you find this helpful, and then maybe even go purchase this book for yourself!

how-to-live-well

Chapter 1: Educating Family and Friends about Chronic Pain and Illness

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” – Alan Watts

It may take a while, longer than we want, for family and friends to adapt and adjust to our lives with chronic illness. I know from experience that the people who love you will try their damnedest to understand everything that you are feeling and going through. Of course, that’s not possible, since they aren’t going through it themselves. However, the effort is all that matters. It can bring about frustration for us when we feel like our loved ones really just don’t get it–but instead of getting frustrated with the ones who care for us, instead we should try to educate them on what exactly we are going through, to help them better understand and in turn better love and care for us how we need to be loved and cared for.

  • Share information from the internet or other sources
    • A quick Google search can bring about a number of organizations and associations that are devoted to your condition/illness and others like them. You could print a few pages, send links through emails, or just read through them with family and friends. You can let these people know that it’s important to you that they go through the information–don’t treat it like a test though–keep it lighthearted!
  • Communicate in writing
    • This is always effective for me–mostly because I cry every time I talk about something that is either very important to me or about something that has affected my life heavily. Actually, I just cry when I talk about a lot of things–I’m just a sensitive person and proud of it! So for me, I feel like it’s a lot easier to get out everything I want to share with someone through writing (clearly, since I have this blog.) When you write a letter or note to someone, make sure to use “I” more than you use “you.” You could start by describing your day to day life with a chronic illness, explain to them how you have had to adjust your life because of it and just let them know how you truly wish you could be as active as you once were–because sometimes it’s hard for outsiders to understand that we just can’t do the things we once were able to. Toni made a good point in this chapter–she said you could write to them about how the way you will “feel on any given day is unpredictable.” This is so completely true for me, and I find myself reminding my friends and family of this as often as I can.
  • Work on accepting that some people you’re close to may never treat you the way you’d like them to
    • This is something I still struggle with, but I’ve become much more comfortable with over the years. Some people may not show an interest because they think that if we want to talk about it, we will bring it up. For me, I think this rings very true for a lot of the people in my life (just assuming) and I’m ok with that. It’s nothing wrong that they’re doing or feeling. One really important note that Toni says in this chapter regarding this point is: “Understanding that others have their own ‘demons’ can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.” We need to understand that everyone has something. We can’t take it personally when they may not always remember to ask us about ours.

I have an amazing support system built of family and friends that I hold near and dear to my heart. They all are understanding and accepting of me, no matter how I’m feeling or how my health changes. There are some people who I have accepted may never be as understanding as the next, but all that matters is that I have a solid group of people who love me and accept me whether I’m having a 1/10 or 10/10 pain day.

Next up will be: “Letting Go: A Not-To-Do List for the Chronically Ill”

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