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Chronic pain... What we want THEM to know

People who live with chronic pain assess risk management every day, multiple times a day. Everything was coming to ahead and I was feeling desperate. I so badly wanted to be able to explain how this body felt. What chronic pain was like and I started searching for resources for "partners" so that they may understand better.... I could hardly find ANYTHING! A few blogs here and there, but nothing with substance. One thing that partners struggle with when they have chronic pain is intimacy. I'm not just talking sex either, but the intimacy that partners have with one another when it comes to "reading" each other. Predicting what the other needs. Understanding each other. I began thinking about this blog... I reached out to others who had chronic pain and started asking "what would you like your partner to know that is not talked about?" Many responded, so this blog is not solely based on my experience but a composition of many. The purpose of this blog is to help create an understanding, an acceptance while deepening connections. So that the healthy and pain free partner can see that they are not alone, that there is solutions. It just looks different. These are things we want you to know.

Many who have chronic pain at times or ALL the time feel this way feel defeated, hopeless, emotional with mood swings at times. Some... "Never asked for this," and is a result of someone else's actions. Others, it is a result from pushing their body so hard as young athletes, some were told to "suck it up / don't let the team down". How many did not listen to their health professionals and played anyway, pushed anyway and now have real life adult consequences because they could not see that they were not invincible and that their choices could have lasting effects.

That brings me to another reason for chronic pain. Self sabotage, knowing better, overdoing it and not taking care of yourself. Not doing what you know you would help you feel better. [I'm gonna get some haters here] but weight gain and diet is a HUGE factor for pain, and as it continues to get out of hand with a life style, the chronic conditions that pile up one after another make it harder and harder to get on top of things, a person will deteriorate further and further. Weight gain increases your pain. I often wonder what my recovery would have looked like had I weighed 200 -300lbs and not the 155lbs that I was.... I can say this with a garuntee.... I would not have been out of that hospital bed in a wheel chair and transferring from bed to bathroom in two weeks... I would have been stuck there as I would not have had the strength and the man power to help move me. As it was it took 6 people to move me for the first time from bed to wheel chair. I can say with 100% certainty, my recovery would have been slower because the body heals within motion. It was never meant to be stagnant.

In October of 2022 I was exhausted. I was "uncomfortable". I could not do what I normally did and would have to say I can't do that right now, or I need to do things this way because..... The frustration, disappointment that came across my husbands face... his eyes.... He never would have dreamed that this would be his wife and life when he asked me to marry him. I used to climb ladders, go tubing and knee boarding, sledding, hiking, ect. I'd run and chase the kids, get down on the floor to play with them, I'd clean the whole house in one day AND make three meals a day. Now I measure out my steps, I think about the activity and I weigh the pros and cons and "is it worth the excess pain?"

Let's get the nitty gritty out of the way first. Sex. It is an important part of a committed relationship. However when one has chronic pain, it's not so easy to just "be put in the mood". Its not so easy to just "go with it". Instead the one with chronic pain is thinking "is the after math consequences of the increase pain worth it. What's the pain level at now, and will I be able to tolerate the increase after?" They think about what positions they are capable of "that day" because what works that day, may not work the next time in the moment. Then if the person decides "No, I can not today." Then the partner often feel rejected, even at times neglected if it is happening more regularly. They wonder if THEY are doing something wrong. Sometimes the "no" can be so frequent that the partner begins to believe that "your just saying that so you don't have to... You don't want me any more". Often an "ouch" or "that hurts" results in an instant recoil from any form of intimacy for fear of hurting them or being rejected even further. The flip side is the chronic pain sufferer just goes "along with it" even though they are uncomfortable/in pain just so the other can feel connected again. This does not do the relationship good. Resentment can build, the body will learn to associate sex with pain which then makes everything on edge mentally, emotionally and physically because of the increase of pain. The last thing any great partner wants is for their lover to associate sex with pain. Hamilton health and science Sex and chronic pain Some solutions are:

  1. Physical touch. Not just sexual, but regular hand holding, coming up to them just to hug or give a kiss with "no expectations of more". caressing their back as you walk by or even stopping to hug from behind and giving a moment to breath each other in. When a person can learn to instantly relax with a partners touch, that will lower pain levels. [When a woman is in labour, if she has prepared her body enough, the touch of her partner can be a physical cue to relax that area of the body. The shoulders, the neck, the low back. They teach this in many birthing classes and the same science can be applied to chronic pain.]. Cuddling on the couch and maybe just gentle caress on the arms or back can also help with intimacy and being able to relax. You can pair this with matching your partners breathing patterns which also helps the body to "let go". It is important though that during these times there is NOT a leaning towards sexual acts. Its just the two of you expressing affection.

  2. Helping with other responsibilities around the house so your partner does not have to expend effort or energy which can be used for "later:)". Cleaning the bathroom is always a good one as there is lots of up and down movements needing to be done with washing floors, showers, tubs, toilets, sinks and mirrors. No one "likes" to clean but if this is normally your partners responsibility, taking it on enables the person who deals with chronic pain to put their energy into something else. Maybe they can make your favourite meal, or have the desire and energy to go out on a date with you instead of being exhausted and just wanting to stay at home. Be honest with us, we did not see ours lives being here either and have to learn to live in this new reality. Do not say you can or want to help if you don't intend of following through. If you say you will help or are going to do something... Don't make your partner wait or forget about it.

  3. Date your partner. Plan activities that your partner enjoys. That they can do with little difficulty. Often those with chronic pain feel like a bystander in their own lives because there is so much they "want to do" but no longer can. We will need patience. If your partner likes cooking, join a cooking class that you can do together, if they love animals, go to a zoo, or horse back riding [equine therapy does amazing things]. Volunteering at something they used to enjoy doing. Swimming is great to do together [AND those who include water therapy in their recovery regularly, get better faster]. If you loved going on camping trips but now can't... think of ways you can still go and modify it. An air mattress instead of sleeping on the ground? Renting a motel or staying at a hostel and doing camp activities during the day like fishing, making meals over an open fire. Instead of hiking in unpaved areas, choose an area with paths and benches for rests. When you can bring fun back into your intimacy, happiness, connected feelings, shared experiences ALL lower feelings of pain.There will be many times we can or will get stuck in our own grief and not see yours for what it is. Happiness over pain

  4. Be mindful of weather changes. I know its sounds silly, but weather changes can play a huge role in how we feel day to day. Cold weather exasperates things and seizes joints. Rain creates an ache inside us that we can not escape from. Changes in barometric pressure can trigger brain fog, the inability for the body to move the way it normally would. This can also then affect depression as many who have chronic pain also have depression. Their brain is working so hard to just manage the pain that other things can become overwhelming and create a more stressful feeling. Often our patiences run thin and and we don't even recognize that we ARE in more pain and it takes time to process and recognize that increased pain is the cause of our mood swings and excess stress. So if you have sever weather changes where you live, be mindful. I encourage to read up on what certain weather does and how it can affect a person. UK study Pain care

  5. Biggest one and the most difficult for most. Believe them. Believe them when they say they hurt. Believe them when they say they "can't" do something. Believe them when they say they need to rest. Believe them when they say they are overwhelmed and struggling. Those in chronic pain normally wear their shields very well... but 2% of the time, our shield comes crumbling down and all our defences go out the window. We snap, we are irritable, we at times lash out... Or we feel sorry for ourselves, feel like we are incapable of ANYTHING and our lives are just miserable. In these times, know it is not you. Know that it is us and we either need space to work out our anger, or we need you to come along side us, hug us, be gentle with us and at times help turn things around by bringing laughter into the situation to bring us out of our own heads. Believe us, because you are our best friend, our lover and the person we want to feel the safest with.

Many of the listed ideas are just the beginning. Part of this "chronic pain" life requires a partnership of support. That also means being an "accountability partner". I know for many we get tunnel vision when we set our hand to something that we want to accomplish. Sometimes this can be a good thing. It is our driving force that keeps us moving forward and enjoying life. Other times its what can hold us back and cause consequences later. When you are able to have an open conversation that both of you have permission to revisit anytime without fear of judgment, criticism or anger, then many things can occur. Trust, increased feelings of love. We can trust that you have our best interest at heart but do not want us to feel like an incompetent person. Secondly is it helps build even more intimacy. If we trust you with EVERYTHING, our brain can relax more and not worry. The best example I can use for this is this last year we were moving. We hired movers as I can not move myself. My husband had a conversation earlier with me saying he didn't want me to over do it and if it was needed I had to trust him when he told me to slow down or stop... Well this exact situation occurred and he told me "I needed to stop." I looked at him tears in my eyes and said "I don't know how, I need help... tell me what to do?" [Now there were many grief emotions coming up as it was the last home I had memories of our daughter in and now I was having to leave it.]. He told me to leave. "Take your car, go to the new place, unpack what is in your car and then go pick up lunch. We will meet you there." I trusted him to take the lead, to tell me what to do to slow me down and get me out of my head. Without leaving space to continue having a open conversation and knowing that he doesn't view me as disabled, I would not have been able to hear what he had suggested. Control is a HUGE thing in someones life when they are in chronic pain, and being able to take suggestion is not easy when we are spiralling or fixated. Being that person that your partner can relax in and trust makes a huge difference when having difficult conversations.

Chronic pain has many different faces. It can be in the form of migraines, back pain, foot pain, neck pain. It can be caused from a surgery or life changing diagnosis. It can be caused from life style or our nutrition... All of these things can also exasperate our already pre existing pain. So when the yard needs work and it hasn't been done, or the house is in disarray, and the kids are out of control... Remember to have grace. To ask "what do you need help with right now?" And then be prepared to follow through without any complaint when you get an answer. Be mindful that those in chronic pain often are just managing from day to day, specially during weather changes. Take each day as it comes, be open, honest and be willing to have evolving conversations as pain changes sometimes on the daily. [Women for example will feel more pain close to their cycle and on their cycle. So being familiar of each phase of your cycle and your partners cycle will also help you predict activities to engage in and when rest will be needed.]

In closing I want to validate that it is not your fault. This is and will be a struggle for you, it is alot of change and grief. It is ok to ask for help, it is not a sign of weakness, it is strength. Your partners chronic pain is not predictable. As many as the strategies I have talked about in helping to alleviate your partners pain and how to work together.... Its never a "A+B=C" equation. Sometimes it can work like that. Other times ALL the tools can be used and it still seems to be out of control. [That 2%]. It's not your partners fault and that sometimes just extra love and care needs to occur to get things back on track. Don't be afraid to step back. Take a moment and try again. Chronic pain can be as unpredictable as a toddlers emotions. It's ok to put yourself on a time out. Its ok to hug and kiss things better and its ok, to just reason things out. You have to try all the approaches in order to get the results your wanting.

By: Jodi Harty CLC, CHC, CST2, SER 1 Reiki Master

Co Authors: Valissa Thomson and anonymous contributors

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