Fighting Chronic Pain is a Family Affair
By: Tracy Malone
I felt horrible and helpless watching my husband, Dr. Mark Malone, go through intense, chronic pain 24 hours a day.
At the time, we had a new business, and we were struggling like any new business owners, and you wonder; does he just want to check out? Does he just want to not think about all of this for a little bit?
Around this time, I was very worried about his health. He was rapidly losing weight, that was scary to see.
We had financial worries. At one point, we were living on disability checks and credit cards. I worried about our marriage, his relationship with the kids, his relationships with everyone. It was a very uncertain time for everyone in our family.
Pain is really hard on families. You feel hopeless. You want to do everything in your power to take away the pain, but there’s not much you can do.
Signs I Needed Help
My biggest challenge was trying to be his emotional support, meeting his emotional needs, continuing to keep up with and take care of the kids, while also fighting my own fears and emotions.
Every morning the familiar guilt would creep in. Guilt for not being able to stay there with him, for wanting a normal life, for wanting to go be with my three young kids, needing to take a break from it all.
I felt like a failure.
I look back now and realize that I needed assistance, I wasn’t a failure, even though I felt like it every day.
The biggest challenge for family members is finding the strength to care for the person you love who is struggling without losing yourself in the process.
Everyone around you is focused on the patient, understandably. It’s hard to step back and think, ‘Okay, what do I need to do for myself? What do I need to do to make sure I can deal with this long term?’
While you aren’t the one who is suffering through a physical life-altering experience, seeing someone you love go through it takes a toll on your mental health and wellbeing. It’s okay to ask for help.
We were fortunate that our kids were young when Mark began to endure his chronic back pain. Our kids learned empathy and how to help in the small ways they could. At one point, Mark couldn’t even sit at the table for dinner without writhing in pain. One of the kids would take his plate to the sofa where he had to lay sideways to eat.
When Mark’s accident happened in our home, he was in so much pain that he couldn’t get up off the ground. Our three-year-old brought him crackers and sat with him. Lucky for us, little children do understand pain, but I don’t believe they really grasped that there are levels of severity. To them, this was no different from daddy getting a booboo or daddy having a cold.
They were three, five, and eight when it happened. I asked my son, who was three at the time, and is now 15 if he remembers his dad in pain. He doesn’t.
Looking For Hope
Mark had two failed surgeries before he found any relief. We knew there was a risk going into all of the operations.
We did our research and explored our options extensively. We even traveled to Houston several times to get multiple expert opinions.
We had felt that these surgeries were our only option – and our last attempt – at relieving Mark’s pain and restoring some semblance of normalcy in our lives.
When the surgeries failed, I remember thinking, “Okay, this is it. We’re going to have to settle in and see if we can create a new norm and adjust to this new life.”
Because Mark is a doctor, he knew pain could go away on its own. It might take 10 years, but it’s possible. It was our only hope.
Coping And Support
During Mark’s bad years, we heard so many horror stories of friends and other doctors whose spouses just bailed on them. “I didn’t sign up for this. I’m out.”
That’s tragic. To this day, recalling these times still brings me to tears. I can’t imagine doing that when Mark needed me the most. But, I do understand how chronic pain could be a deathblow to a marriage that’s already on shaky ground.
We were in survival mode with three little kids, a new business, ongoing surgeries and appointments, and Mark’s chronic pain. I didn’t have a lot of support, but there was one woman who reached out to me. When Mark was telling his story of his chronic pain, she turned to me, put her arm on my arm, and said, “Oh my gosh, this must be so hard for you.”
That was the most support I got. Everyone is so focused on the patient. It’s their job. It’s the doctor’s job. It’s the nurse’s job. The patient is the priority.
It was a relief to have someone recognize that, as a family member of the person experiencing chronic pain, it was hard on me too, and to acknowledge my own pain and suffering.
Chronic pain is life-changing for families. You might not have the physical agony, but you’re mourning the life you had before the pain and trying to help your loved one any way you can.
You do what you have to do. We learned to cope. We went another five years with Mark in pain.
My friends would tell me, “You’re so strong.” But I just did what I had to.
You have to get up. You have to go forward. It’s not a choice. This is what you do. You keep moving forward for yourself and for the person you love.
If Mark had given up, our story would be different. Fighting chronic pain is exactly that: a constant fight. You need strong people on your side, people that will hold you up when you need it, people that you love enough to hold up in return when they need it.
Every single family member is affected by chronic pain, even if they don’t realize it. Our kids were affected by it, even though they don’t remember. To say that it’s hard and scary is an understatement.
Sink or swim is what I always say.
Tips On How To Cope
- Know it’s real. Remember that this isn’t a choice the patient is making. It’s fair to have doubts; it’s fair to question. But no one would choose to live life in constant pain. You have to trust that your loved one’s chronic pain is real.
- Do your research. Attend as many appointments as possible. Listen and learn. Ask the doctors questions. Pain patients typically have a tough time focusing. Acting as a second set of eyes and ears can help the entire family, doctor, and patient come up with the best overall treatment plan.
- Be vulnerable. As a caregiver, don’t ignore your own pain. It’s okay to admit that your loved one’s chronic pain affects you too, or that it’s hard to face this new way of life. It’s essential to find a support system and take care of yourself, not just the patient.
- Find a new normal. Find your path forward.
- Enjoy the little things. Celebrate improvements as they come, but keep adapting. If Mark was sitting down he was in pain. We made adjustments in our day-to-day to try to make him as comfortable as possible.
- Don’t give up. Never stop searching for options. It can be exhausting, but there is hope. I was satisfied to see that we could develop a new norm as a family. It may not be an easy path, but there is always a path forward.
I remember the day Mark came home and told me he wanted to get the spinal cord stimulator surgery. He had seen so many patients get off the table at their surgery trial, crying tears of relief because the pain reprieve is that fast. Patients that have spent years, even decades, in chronic pain finally experience the relief that they never thought possible.
I figured there might be some necessary adjustments to our daily lives and was still skeptical that it might not give Mark the chronic pain relief he was hoping for. One of your greatest hopes as a chronic pain patient is to get any improvement in your pain level. That in itself is a lofty and sometimes hopeless goal. It’s not necessarily realistic to ask for 100% pain relief, but simply to get it to a point where you can live a normal life, is progress.
Everything changed when Mark got the spinal cord stimulator. Mark got relief instantly. He was able to jump right back into his daily life – at his previous energy level – after seven years of chronic pain. It was shocking.
Our little family had no limits. All of Mark’s energy wasn’t being depleted by eating at the dinner table or going to work. He had the strength to travel, to do activities, to spend time together as a family; everything changed.
The spinal cord stimulator is truly a revolution. It’s the best thing that’s happened to chronic pain treatment since Mark has been practicing. For Mark, for our children, and our entire family, it’s been life-changing.