My husband Johann and I went to pre-marriage counselling. It was a little awkward as the counsellor was Johann’s dad. I skipped the sex questions.
During the session, we completed questionnaires and discussed scenarios (that had already occurred and might happen) to learn how we would cope with challenges as a team. What we didn’t discuss though, was how we would deal with one of us becoming ill or experiencing chronic pain. We certainly weren’t expecting that to happen before we turned 50 so we just agreed, ‘in sickness and in health’ at the wedding and flew to a tropical island for an unforgettable honeymoon.
I was 21 years old the day I last stood without pain. We were furniture shopping because we had just moved back to Australia from the UK. Johann signalled for me to come over to a table he liked, but knew we wouldn’t get because I had already showed him the one I wanted. Happy wife, happy life! On my way over to Johann, I suddenly experienced excruciating pain. We now know severe pain from the sacroiliac joint (SIJ, the joint connecting the spine and the hip) is a common first sign of spondyloarthritis. Still today, we haven’t found a way to ease my SIJ pain.
Johann and I have since become very good at keeping an open dialogue about how we are coping, my pain levels and our relationship but there are 3 things that I am not convinced a partner who hasn’t experienced chronic pain can fully understand. Correct me if I am wrong partners!
#1. I Am Not Lazy
No really, I’m not. When I tap out of an activity, be that something fun or cleaning the house, I can guarantee you I pushed through intense pain and used energy that I need for tomorrow before giving up. I am not lazy, you just can’t see the fatigue or pain I’m experiencing and I would rather not complain about the situation so I often retreat quietly for a rest.
#2. Sorry if I Seem ‘Vacant’
I know you are desperate for lively conversation in the evenings. I try really hard to save energy for when we see each other after work but I am distracted by a constant need to plan. I have a list of what needs to be done and it includes the smallest things like brushing my teeth, getting the remote, serving dinner, putting the car in the garage… most things you would never need to plan for because you are well. I run through this list continuously to find things I don’t need to do so I can get out of bed tomorrow. I feel too bad to ask you to help more.
#3. I Can’t Tell You What I Want to Do
‘What do you want to do?’ is a hard question to answer for someone with chronic pain. My first response is probably to cover myself in heat packs. My second response would be a question, ‘what do I really want to do, like if I didn’t have pain?’, and my third response, the one you hear, would be ‘whatever you want to do’. I honestly can’t think about anything but getting better or resting.
Do you find it hard to explain why you can’t decide what you want to do or wonder if deep down people think you are lazy? It is so normal! We would love to hear in the comments below how you decide what you want to do when you asked! Share this post with your partner and start a conversation about these three important topics. Perhaps make it part of your essential date night!
With love and pain,
The Chronic Pain Couple
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