My husband James has battled Chronic Fatigue Syndrome (CFS) since the age of 14.
At 14, when he was diagnosed with CFS, he was told he would never finish high school, get married or achieve many of his dreams. The best option would be to lower his expectations in line with what his body could handle. Despite these predictions, at the age of 23, I had the privilege of marrying him.
Today, my husband is not completely healed of CFS but can do what he needs to most days. There are still many days that he can't get out of bed. Most of the time, you wouldn't see any visible differences between him and anyone else.
Most people I talk to don't understand what this illness means for our marriage, especially when I explain he feels tired all the time. It doesn't make sense. Aren't we all tired?
Chronic illness is defined as a disease lasting three months or longer. At this stage, we have that beat by about 11 years. An estimated 0.2 to 2.6 per cent of people around the world have CFS. Profound tiredness and fatigue, muscle and joint pain and impaired memory and concentration are characteristics of CFS. My husband often explains it by asking people to imagine "the worst illness you have had. Now, imagine that is the best that your body will feel all day. That is what living with CFS is like".
Why I hate Chronic Fatigue Syndrome
Living with my husband is not easy at times. When every single day the answer to a question like "how are you going?" is "I'm tired" and that impacts every single interaction you will have, it is hard to show grace.
My inclination is to think about what I deserve—because I am tired too and that doesn't mean I can shirk my responsibilities. Feeling tired is not a choice he makes. It's the default setting his body has prescribed him.
Having CFS means my husband sleeps less than I do, needs more rest than I do, finds it harder to concentrate and make decisions, lacks energy and often has to say no to events at the last minute. We have missed out on a lot of parties to stay home and rest on the couch.
My lofty expectations of my husband are often not met and this leaves me sad, frustrated and upset at what things could have been like if he did not have CFS.
Why I don't regret marrying James
Being aware of the many losses that come with being married to someone with CFS, I am left with the daily opportunity to choose to either accept him as he is, or live wishing things were different.
In our marriage, my self-centered nature rears its head on a regular basis. Instead of being sympathetic, understanding and patient with him, I choose to be rude, self-seeking and demanding. I know most of my anger is about our situation, but you can't be angry at a situation, so James gets the brunt of my anger. Then I feel guilty and beat myself up for being angry at him.
If I had to sit with all these feelings for too long—the sadness, the fear and the longing for how things could have been—I might just cry for hours. I'd much rather feel angry and frustrated than sad. I know the James I fell in love with is still there most of the time, but sometimes he is not.
Instead of sitting with these feelings I would much rather apply the gospel to my own selfish heart. In marriage, we are called to lay down all our 'rights' and place our partner's needs above our own. I am called to love him in the same way Christ has loved me, unconditionally.
Unconditional love doesn't come from nowhere. It requires grace, patience and humility, and to be honest, the kind of grace, patience and humility James and I need only comes from Jesus.
It's only in Jesus we find a perfect man giving his life in service for the broken, so on the last day they could be lifted up with him. In the same vein, I follow Jesus and choose to love my husband even when it is difficult.
Being married to James means I get to see him on his best days and on his worst days. I get to stand beside him in his proud achievements and in his darkest hours. I have the privilege of being there to see them in his soaring and in his plummeting. I get to hear every question, every thought, every disappointment and every fear. This is my privilege, but sometimes, it is difficult.
I need constant reminders of God's grace in my life, so I can extend this grace to my husband, even when I feel my rights aren't being addressed. Marriage isn't easy, but that is why it's the perfect platform for learning how to extend the grace Jesus has shown us.
Sarah Young is completing her Masters in Clinical Psychology and loves spending time engaging with young people. She spends her spare time writing songs, running and going on adventures with her husband, James.
Sarah Young's previous articles may be viewed at http://www.pressserviceinternational.org/sarah-young.html