Last week my wife, Meg, wrote about her journey with her invisible illness and chronic pain, in her article titled My Life With Chronic Pain; the feedback has been phenomenal. We’ve heard from people close by, and as far away as New Zealand who appreciated her candor and vulnerability in sharing her struggles and what she has learned over the last 6 years since the car accident. So many people struggling with invisible illnesses feel isolated, alone in their journey, and feel as though they can’t share their struggles because it’s viewed as complaining, or because people simply do not understand.
This week, I want to share a bit of my story over the last 6 years, as a husband to a wife with chronic pain, and father to our two beautiful daughters who have also been a part of our journey. As little information as there is from those suffering from invisible illnesses, I come across even less information from those who are alongside those struggling with the illness, such as partners and family members. I hope that sharing my story can be helpful to those who are also wrestling with this complex, often heart-wrenching journey.
As I was driving into Vancouver this morning, I was trying to figure out how to start what I was about to write – how to sum up concisely the impact of the accident, and my wife’s struggle with her chronic pain. I’m also fairly guarded in sharing my emotional world publicly for many reasons, but I came up with a very succinct and specific conclusion: it broke my heart. Even as I sit here at the Railtown Café writing, it’s all I can do to hold back the tears.
You see, for better or for worse, I have always put Meg on a pedestal. If you’ve met me in person, you’ve likely heard me refer to her as my “far better half,” or comment on the fact that she is the “smart one.” This isn’t pithy banter on my part – it is truly the long-held belief about Meg that I have held, and still do. What I wasn’t prepared for, however, was the impact of seeing my brilliant, high functioning wife, laid out on the couch for weeks on end, unable to function in daily life, and struggling to figure out how many plates she needed to put on the table for dinner. I can’t begin to describe how seeing this changed my life, and changed my focus.
I immediately went into survival mode. I was working for the Fraser Health Authority at the time, and immediately started seeking out jobs closer to home as I was suddenly the only functioning adult in our house, with two children under the age of 4. I was Dad, Mom, housekeeper, breadwinner, and more. Now, I have to say that we have been so fortunate to have an unbelievably supportive family and friends who have given us an amazing amount of support for which I am extremely grateful. I honestly have no idea how we would have survived without them.
Even with all of this help, and even as we started seeing improvements, I was and quite frankly, still am heartbroken. When I’m working with kids, parents, and families I often explain that one of the hardest things in the world as a parent is to see your child in pain; I’m not sure, however, which is worse: seeing your child in pain or your spouse. At this point, I was seeing both and it was overwhelming.
If we fast forward to present, things have gotten significantly better and while Meg can never return to her career, she is forging a new career using art and helping people recover. Although it’s still difficult, it’s amazing to see the changes and to be able to see the proverbial, “light at the end of the tunnel.” What I’ve discovered though is that I’ve been stuck in “emergency mode,” since 2011, and as a part of this, haven’t processed a lot of the emotions involved and the personal trauma involved in the experience.
Part of my struggle and what I’ve been working through is how to move from heartbreak to acceptance (and Meg will find this hilarious because acceptance is a regular topic of conversation between us, mainly my encouragement to her to find acceptance in her new life and role). I’ll admit, I do not want to accept that my wife has chronic pain, and that the wife I knew prior to 2011 is never coming back. I don’t want to accept that our lives have changed irrevocably through no fault of our own, but because of a car accident. I don’t want to accept that my children have had to endure two parents in emergency mode for 6 years and have had their own challenges in response. I don’t want to accept – well, a lot of things. But as I preach to my clients almost on a daily basis, I have to choose to accept because the alternative isn’t helpful. I can’t change the situation, and fighting it isn’t going to bring positive results.
As I’ve wrestled with this for the past 6 years, I’ve learned a few things that have been, and continue to be helpful to me in managing our family life and my own emotional world. I haven’t mastered any of them yet, but hopefully they’ll be helpful to those of you sharing the struggle as a partner of someone with an invisible illness and/or chronic pain.
- Talk to your partner with the chronic pain about the impact it has on you
For many years I struggled to share with Meg how her journey impacted me. To be honest, it’s something I still have a difficult time with. When faced with a partner who is in constant pain, it’s hard to justify your own sometimes. I’ve had times where I told myself, “Your pain isn’t important; look at how much pain she is in,” or, “If you tell her how you’re feeling it’s going to make things worse for her,” and many other variations on this theme. What we’ve discovered in discussing this point is that she has had many of the same things running through her mind and we didn’t realize it. Being able to talk about our fears in disclosing to each other has opened the door to a much more honest and helpful dialogue.
If you won’t let yourself go there, please hear this from me – your pain is just as important and your ability to connect with your partner and be supportive depends on being vulnerable.
- Feeling helpless is normal and part of the process
Anyone who knows me well, knows that I am a fixer. I look for problems and try to find solutions – I probably would have made a good engineer that way if it wasn’t for the math. I have had to wrestle with my own helplessness over the past 6 years and sit with my own fears and anxieties about the future in ways I’d never experienced before. As a husband, I want to save my wife from experiencing pain but I can’t. I’ve had to accept this, even though I don’t like it. I’ve had to come to terms with the fact that I can’t fix her body, I can’t fix her brain, and I can’t save her from the pain. But, I can be there consistently, unwavering in my love for her, even if I can’t make it all ok.
- Empathy is more important than fixing things
We sometimes struggle to differentiate between sympathy and empathy. Brené Brown has a great video on empathy, and I encourage you to watch it here. In short, empathy is the best thing that we can offer a partner who is in pain. It’s being able to say, “I don’t even know what to say or do right now to help you, but I’m here.” It’s realizing that even though we can’t truly understand what our partner is going through, we don’t have to. If we can allow ourselves to be vulnerable with them, we can connect with their experience of the pain, not try to fix it, but be there. Being with someone on a deeper level is far more important than any fix we can offer. It cuts down on loneliness, isolation, disconnection, and thus, reduces anxiety, depression, and actually, it reduces physical pain. So, it’s true – we can actually help our partner’s pain by showing them empathy, being with them where they are at, and accepting the situation we find ourselves in and wrestling through it together.
- Have fun together
There’s a saying that we all know – laughter is the best medicine. I’m not sure if it’s the best medicine, but it sure does help. Physical and emotional pain often shifts our focus off of living life and from the patterns and ways of relating to each other that have made the relationship successful. Meg and I have always had a healthy dose of humour in our relationship – mostly laughing at idiosyncrasies in life, mistakes we’ve made, or situations we find ourselves in.
One thing that chronic pain does is make it difficult to find humour in the current situation. Who laughs about pain, right? Well, we should. It took some time, but now Meg and I can laugh about some of the things we experience in life due to the chronic condition. Whether it’s laughing when a plate drops because of ulnar neuropathy, or laughing when I ask her to do something that is very obviously not possible for her and she just stares at me with that look that says, “What part of that looks like something I’m able to do,” or laughing about things that have nothing to do with our situation but make us laugh and relieve some stress, the humour allows us to lose sight of the pain for a while and get back to “normal life,” again.
- Don’t be afraid to ask for help
I have had to lean on more people in the past 6 years than ever before in my life. Asking for help is not something I’m particularly good at. My family, my friends, and my professional colleagues have all stepped in to help in so many ways and I can’t thank them enough. I’ve also had to do some counselling, and continue to do so because there are aspects of my life and my wrestling that I need someone to walk through it with. My counsellor has shown empathy, skill, and also challenged me when I need to be challenged. Whether you’ve sought counselling before or not, I can’t emphasize enough how important it has been to my journey.
- Adjust your expectations, and redefine “normal life”
As much as I’ve tried to take a positive spin in this piece, there is no escaping the fact that chronic pain and illness brings an incredible sense of loss with it. There’s no escaping the fact that the life we had prior to 2011 is, to the best of our knowledge, never coming back. I have mourned this fact for years, and to be honest, I’m still in that process. What I’ve come to, however, is that in accepting the situation I’m able to redefine our new normal and my expectations. What does this mean for me, and us a family?
It means that I’m the only one unloading dishes from the dishwasher and I do most of the loading because bending over is too hard for Meg most days. The upside is that I can load it however I want and make it efficient, which gives me joy.
It means that many nights, Meg isn’t able to put the kids to bed because she is lying on the couch downstairs and making it up the stairs isn’t in the cards that night. The upside is I get 1:1 time with my daughters, which is time that I cherish and probably wouldn’t have had otherwise.
It means that most nights, we find ourselves on the couch in front of the TV watching some silly TV show because we’re too tired and brain dead to do much else. The upside is, we get to sit in close proximity to each other, and laugh at the shows we are watching, and sometimes when we both have the energy, the TV doesn’t go on and we sit and talk for hours like we used to and connect on a deeper level. This doesn’t happen as often as either of us would like, but when it does happen, it breathes life back into us and into our relationship.
It means that having gone through the past 6 years, I am convinced that I am incredibly fortunate. I have two beautiful children who I adore, and who love Meg and I unconditionally. I have a wife who, despite all my shortfalls and mistakes I’ve made both before, and since the accident, chooses to love me for who I am and all my limitations. I have been forced to spend more time with my family and around the house because I’m needed there to pick up some of the slack – time that I may not have otherwise taken if Meg was functioning at 100%.
Last but not least, the accident was a major motivating factor to launching Alongside You, where I get to see peoples’ lives change on a daily basis. And because of our experience through the accident we can say that we understand the pain of many of our clients because we also live it on a daily basis. While I won’t speak for Meg, although I’m sure she’d agree, Alongside You has provided meaning for my pain. While I still don’t like the situation and the pain Meg is in, there is an emerging sense of purpose. I know that our experience has allowed me to help others through their own journeys in an authentic way that I would not have otherwise been able to.
At the risk of being repetitive, I want to repeat the quote from my daughter Ava because she has been a great source of wisdom for me in our journey, and I honestly can’t put it any better than she did.
Just because you have a hard life, it doesn’t mean you have to have a bad life. With challenges or disabilities, you can still have a great life. – Ava Neufeld, age 9
As hard as it has been, I am grateful for our life. I am grateful for the support we have received, and for the personal growth I’ve gone through as a result of the accident and the journey through chronic pain. I’m also grateful for the chance to make some meaning out of our experience through our work at Alongside You. Meaning is so important in our lives, and in processing our pain.
Thank you for reading this, and thank you for allowing us into your lives as Alongside You.