How do you cope if you are suffering from chronic pain? And how can family members or friends offer their support to the sufferer? I asked someone who knows all about it.
Rose M Peluso’s book, Behind the Tapestry: My Discovery of God's Grace Amidst Chronic Pain and Loss, is the compelling true story told from behind convent walls, of one woman's struggles to "make peace" with a mysterious chronic illness and her unfulfilled dream of being a Catholic nun. It is available in paperback here (https://www.amazon.com/Behind-Tapestry-Discovery-Amidst-Chronic/dp/1637281358)
You wrote your book from a Christian perspective and your faith is central to how you eventually make peace with your chronic pain. What can people who don’t ascribe to any particular faith learn from your journey?
Well, obviously I’m a Christian, a devout Catholic. And since the majority of my “chronic pain story” takes place behind convent walls, I had to tell the story from that perspective. There was no other way to tell it. However, I think other chronic pain sufferers, even those who don’t practice their faith or perhaps, just don’t believe in God at all, can still find in my story the central theme I wanted to express and emphasise, which is this – if I can “make it” and “come out the other side of pain” – then you can too. What do I mean by that? My pain no longer rules my life. It no longer dictates to me what I can and cannot do. I am no longer obsessed with it. I am no longer the cliché, of “chronic pain that happens to be a person.” I am now, a “person who happens to have chronic pain.” Just as I found a way to survive and thrive and to carry on and live a decent life and experience many moments of peace and happiness – other chronic pain sufferers can do so as well. For me, because of my faith in the Lord, His help and grace were a huge part of why I “made it” and “came out the other side.” But for other chronic pain sufferers who don’t have this belief in God, they’d have to find another way. However, that doesn’t mean they couldn’t find whatever is out there that works for them. There are many ways to “survive” chronic pain. My memoir reflects just one way, the way it happened for me. But I think there are other ways and chronic pain sufferers have to keep fighting and never give up – to find the way or that one thing that works for them.
“Take 15 minutes at a time”
Anyone who suffers from a chronic condition is familiar with the emotional ups and downs that go along with it. What words of encouragement can you offer to people in this position?
The only words of encouragement I can offer is this, the very wise advice that was given to me many years ago by a fellow Christian – take one day at a time or better yet, take just 15 minutes at a time. Ask the Lord’s help, for His grace to get through just the next 15 minutes and then after that time has passed, ask for the same grace for the next 15 minutes and so on. Oftentimes, chronic pain sufferers can’t take 24 hours at a time, it’s too much to deal with. So asking them to take just 15 minutes at a time, somehow seems more manageable. They feel they can handle 15 minutes. And little by little, they come to realise that they’ve actually gotten through a whole day. Another piece of advice or encouragement – don’t ever give up! Keep “fighting,” keep hanging in there. Tomorrow, or the next day, or the following week, may actually be better, even if today is lousy. Do whatever you need to do to make it through the day and you’ll see that a better day may be just around the corner. But if you give up now, you’ll never know.
Why is it important to have a supportive community when you suffer from a chronic condition?
Having support from family and friends and especially from those with whom you live, is vital to living and thriving with chronic pain. I don’t believe it can be done without support and love from other people. Oftentimes though, people don’t understand. It doesn’t always mean that they don’t want to understand. But it is truly difficult to understand what it is like to live with chronic pain unless you yourself are going through it. People can love and support you but still not “get it.” And I will admit, this can be very upsetting and frustrating for those of us living with chronic pain and who feel misunderstood. It’s not easy. But it isn’t easy for those who live with or who are in any way associated with a chronic pain sufferer. It’s just a hard road for everyone. As chronic pain sufferers, we can’t push away those who love and want to help and support us. Whether they totally understand our pain or not. They still love us, and want to help and be there for us. Sometimes this can make all the difference in the world. I know in my life the support I received from my family and friends after returning from the convent was vital. Not only were my parents and siblings supportive of my pain, but they were also very understanding and sympathetic to the loss I suffered because of leaving the Sisters. There was an enormous amount of grief felt in my heart and soul after I left my religious life. So I was dealing with this emotional and mental pain as well as my physical pain. But thank goodness, my immediate and extended family members were there for me. They sat with me when I cried. They listened to me go on and on about what happened in the convent. And they were there each and every time I needed to complain about my physical pain. Having people around us, to talk to, to listen to us, to cry with us, hug us, and reassure us that we aren’t alone, is key to the survival and well-being of all chronic pain sufferers, in my opinion.
“Be there for your loved one”
How best can family and friends support someone with a chronic condition?
Just be there for your loved one. Don’t give up on him or her. Even if they are mean or rude to you. I don’t condone this kind of behaviour in a chronic pain sufferer, but it happens. I know that I’m guilty of this, more times than I care to remember. But even if your loved one tells you to “go away” and they don’t “want or need your help,” don’t leave! Support them in whatever ways they need. Sometimes all they need is to know that someone is there for them, they’re not alone, that he or she is loved, cared for, and supported. Sit with your loved one. Listen, really listen to him or her. Try to understand and sympathise. Hug them. A physical touch; holding a hand, a pat on the back, a kiss on the forehead – anything like this, informs the chronic pain sufferer that you really “see” them, you acknowledge them, and you realise that he or she is not only their chronic illness, that he or she is a person, a person you love and truly cherish.