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When I Shared My 6 Fears About Lupus With My Husband


Recently I wrote a post about my fearswhich included dying, hospitals/ERs, lingering suffering, medicines, being alone and depression. Afterwards I shared these six fears with my husband. When he asked me why I was afraid of depression, I found I couldn’t manage to summarize or read aloud what I had written. It simply was too difficult and real for me to articulate. I told him he should just read it himself in order to understand.

What happened after he finished reading was entirely unexpected.

After giving me a big hug of comfort and understanding, he surprised me with a revelation. He told me, “I understand because those are my fears, too.” I was floored.

“You fear the same things?” I asked in astonishment. I knew I wasn’t the only one with fears, but for him to tell me he feared the same things was extremely enlightening. Of course, how he experiences those fears are different from the way I do, but they were still the same things.

He was afraid of my first three fears for essentially all the same reasons. My dying, hospitals and me dealing with lingering suffering all impacted his gut-deep anxiety of seeing me hurt. He isn’t an overly emotional man, but it was clear to me that this affected him strongly. I know the lengths he would go to in order to prevent me from having to go through any of that, even if it meant he had to bear it himself.

That these things crossed his mind when he entered a hospital or ERs really touched me. I have done my best to keep my uneasiness to myself, as clearly he has, too. We visit folks in the local hospitals reasonably often, so this isn’t a rare thing for us to be there. It definitely made me feel much less alone to realize he shared my trepidation when we go to a hospital.

His fears concerning my medications are pretty much right in line with my own feelings about them. He’s also glad they help me, but he’s also afraid of side effects, of them not working and afraid of the unknown when something new is introduced. Even if he isn’t the one experiencing these things first-hand, he does have to deal with helping me through them. He’s always right there, walking beside me as I struggle with whatever is going on. He knows. He feels it, too. I can’t tell you how much that helps.

He’s always been worried about the possibility of having to leave me alone in the world, even before my health declined. He’s just that sort of loving, caring man. But the thought of me struggling by myself with my lupus is almost more than he can bear. We both pray dearly that nothing will take either of us away from this world because neither option is at all bearable to think about. We need each other. It feels good to be valued that way, lupus and all.

Last of all is depression. I feel for him in this fear because as hard as it must be to spiral into that darkness, it must be so much harder to watch one you love so dearly fall into unreachable darkness. His fear here is painful to see because the anticipated agony is so visible to me. His worry is that I will slip beyond his ability to call me back, and that I will succumb to the fears and despair lupus can weigh on a person. He’s afraid of watching me move beyond the influence of his love. We always work on problems together, and it would be wrenching to have something like depression remove that. That is the crux of his fear concerning my becoming severely depressed.

As odd as it sounds, it comforted me greatly to hear him confess to these fears. I’ve told him in the past he shouldn’t hide his worries from me, and that knowing his fears helps me to feel not so alone, as opposed to taxing my emotional strength. This was a prime example of how true that is. His opening up to me about his feelings and fears helped me to lean on him and let him lean on me in return. Together we’ll muddle through. Together we are stronger than trying to wrestle with these things alone. I am so grateful and blessed to have him as my husband, my soulmate and my biggest source of support, comfort and love.

To all the caregivers out there, most especially the spouses, a deep and heartfelt thank you.

man and woman touching foreheads

Follow this journey on Lupus Rhythms.