This post is a little more personal and probably a little longer than my usual posts so please bear with me! I’ve had a few situations occur in the past two weeks that have really motivated me to share what it’s like to live with someone who is in Chronic Pain. I have usually been reluctant to talk about this topic because I’m not the one in pain. And living with daily, chronic pain, pain that ranges from tolerable to torturous, certainly trumps my experience as the spouse of someone in pain. However, I know that I am not alone in being impacted by the chronic pain of a loved one.
I don’t remember Mark’s level of pain impacting him much when we started dating. I do remember him doing something at work which aggravated his back and was sent home with a diagnosis of a strained muscle. Over the next few years the pain in his back had returned and became constant. We returned to the doctor and were sent for X-rays, CT Scans and MRIs on his lower back which showed multiple herniated disks and spinal stenosis. A diagnosis and condition which led to a path of consultations with specialists, different types of shots, steroid injections, pain pills, physical therapy, supplements and almost every other suggestion anyone had and ultimately all he ever got was additional injuries. We eventually ended up in a place a few years ago where there were days he couldn’t get out of bed until 10 or 11am after hours of icing or heating pads and stretching. A place where he couldn’t hold the baby or really help with the toddler because he couldn’t lift more than a few pounds, the toddler might jostle him, or he couldn’t bend to play. A place where he would come from work and basically collapse (and then not help with the kids, dinner, household stuff) because the day at the office, of sitting in an office chair all day long and pretending to not be in pain at work, had taken his last ounce of energy.
And while you may have a lot of empathy and sympathy for him as you are reading this, I can honestly say that my empathy quickly turned into resentment and anger. I was working full time and taking care of a baby and a toddler. I was also then doing most of the household work and still often taking care of Mark (making his doctor appointments, filling his prescriptions, driving him to appointments when needed). When I woke at 6:45 am and got two kids ready for school/daycare and got myself out the door with not an ounce of help while he just laid in bed, I resented the crud out of him. I often accused him of being lazy. Because, as I later realized, it was much easier to accuse him of being lazy and resent him for choosing to stay in bed, than admit my husband could not help me. I struggled to believe that he physically could not help for a very long time.
Some rare mornings, he actually would get up and help. And this almost made it worse! By helping on occasion, it showed he could help, which actually fueled my belief… my ridiculous belief… that he was choosing not to help the other mornings. Of course the man who loves me, who would do anything in the world for me, would not actively chose, on a daily basis, to not help with his children in the morning! Of course he would not choose to be late to work almost every day! Or chose to collapse in pain the moment he walked in the door at night! But in the moment, in the moment of exhaustion and frustration and being overwhelmed, I would accuse him of being a jerk and not helping by choice. He would try to explain that it wasn’t a choice and beg me not to get upset because then my anger would stress him out and make his pain worse. But it is hard to not get upset; chronic pain becomes a third person in the marriage…. a mistress if you will. He stayed in bed with his pain rather than get up and be with the family. Chronic pain impacts intimacy, it impacts self-esteem, it impacts every factor within a marriage and a family. Chronic pain is a faceless mistress.
So why did I struggle for so long with being understanding of his pain? Overtime I have been able to identify a few different reasons. Some of my reasons will resonate more with you than others and that is okay. Some of my reasons are even contradictory because living with someone in severe pain elicits a lot of different emotions.
1) It is sometimes too much emotionally to accept that my husband is in a debilitating amount of pain on such a regular basis. When surgery isn’t an option and pain medication can take the edge off the pain but not eliminate it (and has its own side effects), the stark reality that he has to find a way to deal with his chronic pain for the rest of his life is a very hard reality for both of us. As I mentioned above, for years it was easier to accuse his of being lazy or a jerk than truly accept he wasn’t helping because he couldn’t. Denial is a very strong defense mechanism! Patients with chronic pain also have a shorter life expectancy than those without chronic pain (according to some studies) which also scares me. I cannot remotely entertain this possibility; I’m just mentally not ready to accept this!
2) Having a spouse with chronic pain is a very helpless condition. Again, while it is obviously worse for the person in pain, there is usually little the other non-pain spouse can do to alleviate the suffering of the in-pain spouse. Not being able to help the person I love is a harsh reality to accept. Many of us are caregivers in our families and while we can care of our in-pain spouse, we can’t fix them or cure them. Mentally this too is hard to accept.
3) Somewhat contradictory but yet also true, having chronic pain be the reason he can’t do something becomes tiresome and at times very frustrating. This one sounds very selfish and it is; but let me provide an example to help illustrate. Being the only one in the house that can utilize the dishwasher because the angle of unloading and loading the lower racks of the dishwasher is a bad angle for your spouse’s back may not seem like a big deal. But when there is no option on sharing chores, when there is no ability to help, but still a contributor to the mess, over time the “excuse” of his back being bad gets tiresome. It is frustrating to him to not be able to help me more. But it is also frustrating to not get help more.
I’m sure some people reading this will have negative reactions and not necessarily agree with or understand my points. And I am completely fine if we have differing opinions/reactions. It has taken me a long time to truly understand my husband’s chronic pain and accept it in a way that makes sense to me. I have learned how to regulate my emotions better and not lash out as much; I have learned to accept his physical limitations and be less scared by them. I have learned a lot from others with chronic pain and chronic conditions (I love the concept of Spoon Theory for further helping understand the good and bad days or even good and bad moments). Luckily, I have never experienced a debilitating condition or a chronic condition (except for two pregnancies which seemed to last forever) but those don’t compare to what Mark has had to endure with his different physical issues.
Mark has also made huge strides in his mobility thanks to his finding the Optimally Balanced program. He still needs pain medication to reduce his chronic pain, but he has gained about 85% of his mobility back. He can interact with the kids, help some around the house, and he gets out of bed by at least 9am! But even more importantly, we learned to communicate. We learned to check-in about his limitations (and a big piece of this was his learning to speak up) so we can modify things as needed. For example, standing in line is still awful for him; but instead of his avoiding any trips where standing might occur, we communicate ahead of time about the plans, assess as we are out and modify as needed. So he still can participate with the family and not then be bedridden for 3 days after because he pushed himself too far. He isn’t 100% fixed, nor will he ever be, and his chronic pain mistress his here to stay; but he keeps moving forward one day at a time, as do I. We are a work in progress.