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 that he wouldn’t 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. At the age of 23 though, 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 but most of the time, you wouldn’t see any visible differences between him and someone who doesn’t have a chronic illness.
Most people I talk to don’t understand what this illness means for our marriage, especially when I explain that he is tired all of 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 eleven years. An estimated 0.2 to 2.6 per cent of people around the world have CFS, which is defined by profound tiredness and fatigue, muscle and joint pain and impaired memory and concentration. My husband often explains it by asking people to imagine “the very 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 often 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 that I can shirk on my responsibilities. However, being tired is not a choice that he makes. It’s the default setting his body has prescribed him.
Having CFS means that my husband sleeps less than I do, needs more rest than I do, finds it harder to concentrate and make decisions, has a lack of energy most of the time 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 often leaves me sad, frustrated and upset at what things could have been like if he did not have CFS.
Why I’m Still Glad I Married My Husband
Being acutely 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 instead to be rude, self-seeking and demanding. I know that most of my anger is really 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 actually sit with 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 rather feel angry and frustrated than sad. I know that the James I fell in love with is there most of the time, but sometimes he is not.
However, instead of sitting with these feelings I would rather apply the gospel to my own selfish heart. In marriage, we are called to lay down all of our ‘rights’ and place our partners needs above our own. I am called to love him in the same way that 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 that James and I need only comes from Jesus. It’s only in Jesus that we find a perfect man giving his life in service for the broken, so that on the last day they could be lifted up with him. In the same vein, I try to follow Jesus and choose to love my husband even when it is difficult.
Being married to James means that 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.
Don’t get me wrong, I love being with my husband. We laugh together, we love each other deeply and we spend time planning adventures and our future together. There is no-one I would rather spend my life with than James, but sometimes, living with him is difficult.
I need constant reminders of God’s grace in my life, so that I can extend that very grace to my husband, even when I feel that 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 that Jesus has shown us.
Recently, I wrote a song about these feelings and emotions and how I’m learning to love James in the middle of all of it. It would mean the world to me if you would listen.