(Written with a lot of help from the TPC online community)
What runs through your head when you have the best intentions and dare I say are looking forward to a planned event only to cancel at the last minute because Bam…………Mr. Ugly comes to town (aka pain flare)?? How do you feel when the pain stops you from attending a family function or get together with friends? What goes through your mind? Do you feel guilty?
During the month of April, we asked TPC online community members to share their thoughts. Here is what they told us:
- I feel like I am not worthy to go. I feel like I don’t deserve to be part of it.
- I get angry at myself.
- I really don’t feel guilty if I have to turn down an invite any more. I guess it’s because it’s been part of my life so long and because those who are important to me know that I’ll eventually make it out to see them.
- I remember having to miss my granddaughter’s first birthday … my first grandchild and that one really hurt.
- I used to get angry and now a lot of times will go anyway and suffer through it… terribly drugged and with a fake smile.
- I often don’t go if it means I may have increased pain and then they have to take me home and it will ruin their fun.
- They say we’ll find something to do so you don’t feel so bad, that may work once or twice but living with it week after week it just makes you mad when people say that and it does get old fast.
- I drank and behaved badly even tried to out run the guilt.
- I know that I try to keep busy, when I turn down an invite at the last minute, so not to think about how I may have disappointed someone.
- I do not feel guilty because I have to do what is best for me and only I understand that. If that is hard for others to accept, it is their lack of understanding and knowledge, not mine.
- Sometimes I do need to cancel going somewhere, or cut things short when my pain level is high. This makes me feel regret and some guilt. My disability, and the causes of my pain is not visible, so I wonder if those who don’t really know my issues will be irritated, or think I am just skipping out.
- I know I’ve felt guilty for the many times that I was the one to cancel at the last moment, so now I make no promises.
- I stopped making definite plans a long time ago, and it really stinks!
How would you advise someone less experienced or stuck in how to deal with those guilty feelings?
- [pull_quote align=”right”]“Guilt is a rope that wears thin.” –Ayn Rand[/pull_quote]
- There was a time years ago that my family stopped asking me to be a part of celebrations and events and that hurt so much more than the physical pain I live with. It wasn’t because I had canceled so many times, it was them thinking because I live with pain that I would not be able to attend. Sometimes when you live with pain the people around you think they are helping you by not inviting you and that way you have nothing to feel guilty about. That is so far from the truth but they mean well. Pain steals so much from us and for me they came a time when I decided that it would not steal my ability to attend events or celebrations. I always figure I am going to hurt either way, so why not go for it and more times than not, even with the pain, I have a good time.
- I make plans but it is always in the back of my mind that the pain could change those plans.
- I just do the best I can and if it isn’t good enough then it’s their problem.
- When you first have chronic issues you lose your friends.
- It’s easier for me being a hermit.
- I was going to say the people I do stuff with normally already know my issues and I am fortunate that they plan around me or enough ahead that I can plan my body or try to plan my body to behave.
- I try to tell the pain to take a hike, I don’t have time for it and go anyway and grin and bear my way through it.
- Sometimes you do what you got to just to enjoy living.
- That’s been my life for so long that you learn to get past worrying… there are so much more important things than the ones you can’t change.
- If going or doing something means I may be sore… I go do it because I might be sore anyway.
- Living with pain stinks and always will, so do you have the energy to waste fighting the pain or do you want to find something else that might be fun?
In turn, we asked caregivers, family and friends about how they feel when someone with pain cancels out on them:
The bottom line is nobody wants to feel like a “party pooper” or disappoint people they care about the most. Life is messy and pain can be a most unwelcomed intruder. Being flexible, strong willed and pardon the Cesar Milan reference, one’s own best “pack leader” seems to be a resounding way most veterans in pain use to live their lives to the fullest. One seasoned pain advocate shared that she talks to her pain, as if another person. She basically commands her pain to BACK OFF! Trust me, if she told me that…………..I would submit. Then, she turns on her heel and leaves it behind as she moves forward. Yes. I am in awe.
Here is a leave behind that may help those readers who want to get back into the driver’s seat and return pain to the unwelcomed passenger, it is.
Tips from Eight Ways to Declutter Your Mind
- Accept What Is
- Be Kind To Yourself
- Release Your Guilt and Fears
- Let Go Of Control
- Visualize What’s Important To You
- Focus On Your Life-Force Energy
- Allow Yourself To Be Vulnerable
- Find What Doesn’t Serve or Interest You and Let It Go!
Whether you decide to get up and go or fail to show….just leave guilt behind. Guilt is a useless emotion that only sucks the life out of you. You need all your energy to fight pain and live the best life you can.
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If you are a regular reader of the TPC blogs, you may be familiar with our Daily Living blogs. If not, get ready to learn about how it is possible to live a new way of life with pain. I invite all of you to interact with myself and others on the topic of Failure to Show (& Feeling Guilty) by commenting on this article and joining the General Discussion on Pain found in our discussion forums on the TPC website. Signing up to participate in the discussion forums and other features of our online community is easy and free. Register Today!
Thank you for this. It is so hard to know when it is okay to plan stuff and when it will be okay to tentatively plan something.
A couple of weeks ago I had to back out of a commitment at the last minute due to migraines. I am still struggling to balance the guilt feelings with the certainty that I made the right choice for my health on that day.
I’m lucky enough to have a great friend who is helping to plan an all day outing next week and she has thought of everything possible to plan in advance; special parking, a hotel reservation just in case, stuff to bring and have in the car just in case.
Wow FredFriend, can you bottle her to share? It would be so great if others without pain would share how they help their besties with pain, so that fun can be had by all, right?
FredFriend, Your friend sounds wonderful and it is great that she can look outside the box at ways to help you enjoy time with her but she is prepared if the pain intrudes on the day.
It would be so great if your friend would write a message/blog to share with other besties. It may help them to see that it is ok to plan ahead for the pain, just in case.
Sorry, she isn’t even on social media. She works about 10 hours a day and is a wife and mom in addition to being a super fantastic friend. The outing was great even though I did get a migraine. She was very supportive and we powered through it. A great time was had by all and we slept very well in our own beds at home afterward so the hotel reservation was cancelled.
The event organizers also had an ADA team who did great things for lots of people with a range of visible and invisible disabilities.
Micke…Such a good topic to cover and explore…This has been one of my most difficult issues…
I find myself completely “out of the loop” because I am afraid to commit to any upcoming event
in fear of having to cancel and “ruin the party”…so I end up not doing much , missing what I
need most, which is doing anything that helps “tune out the pain”…”get the mind off of it”….
A complicated mind-set for sure….Thanks for the chat about it….Still working on it
Hugs
Chumbamom
One step at a time, one day at a time and celebrate each milestone. You are worth every effort.