The Thing We Never Wanted to Tell You
I’ve mentioned B’s sickness before in this place, safe in your inbox, but even here I’ve been vague.
We struggled to tell anyone for so long, really tell anyone what was going on. Maybe it was because we ourselves hadn’t fully processed it yet. It all started awhile ago, a year or more and at the time it was maybe happening once a month. Slowly it changed to twice a month and then once a week and now it seems to happen nearly everyday, more often than not.
It’s hard to explain. How do you describe something that no one understands? Something that is still undiagnosed? We think it’s phantosmia, though B hasn’t been officially labeled. The ENT says we’re not alone, he’s had other patients with this thing, but that’s not comforting when we are an anomaly in our own lives.
B smells things that aren’t there, smell hallucinations or distortions. When he breaths in through his nose, sneezes, “wakes up wrong,” talks too loud, laughs or pretty much anything, it induces an episode and then everything he smells is bad - like dead body, rotten meat kind of bad. Everything he eats tastes foul.
It sounds made up when we tell people, understandably most people don’t get it. He doesn’t look sick, he’s not bleeding or coughing. No real signs. It’s been really frustrating for B. He feels like he’s all alone. Honestly, it even took me a few months to understand what he was explaining and why it was a big deal.
It’s affected his mood, his appetite, his sleep and his ability to work. Most days he feels like a failure, alone in the world, hating every second of sensory torment. We spend more time inside, alone in our home afraid his nose will be triggered by activity. Being around people is hard because he feels like he doesn’t fit in, that people don’t understand him.
For the past couple of years we’ve been suffering, silently suffering in the quiet of our own home. We’ve been working through big things on our own. But it wasn’t until the other day that we realized just how bad things had become.
I don’t understand why it takes so long for our brains to recognize how we are actually doing. It seems that we just keep going along, ignoring any of the signs until it can’t be ignored. Well it was one of those nights when B’s anger scared both of us, that we realized that maybe we should try something other than the ENT.
So we went to our family doctor the next day and said things I never thought we would, things we’ve never been able to say before. We said words like, anger problems, depression, mood swings, anxiety and paranoia. Labels that described our circumstance, but that I thought would never describe us.
We filled out a counseling form and checked nearly every box with things we’ve been struggling with. I say we because we have been struggling. It’s nearly impossible to not be affected or changed when a loved one is severely struggling. When the person you live and laugh with is hurting, it hurts you too.
There’s still a stigma, especially for guys who are struggling. I now know why admitting you have a problem is the first step - the biggest step - because it’s really hard. We have a problem. B has a problem, and now I have a problem. Several problems actually.
We have been found out and now are doing our best to keep exposed because the darkness cannot heal our souls, it only breeds more sin, more shame, more hurt and more pain. I’m done covering up with fig leaves and I’m ready to share our struggles with the world, because although I sometimes believe it, we are not alone.
If you struggle with being misunderstood
If you struggle with feeling alone
If you struggle with getting out of bed
If you struggle with feeling like things will never change
If you struggle with not wanting to talk with people
If you struggle with not having control over your life
If you struggle with not being able to help someone you love
If you struggle with wanting to live
If you struggle with hurting those around you
If you struggle with not controlling your anger
If you struggle with not meeting people’s expectations
If you struggle with fear
If you struggle with depression
If you struggle with hopelessness
If you struggle with anxiety
You are not alone.
We aren’t doing well. We have been silently suffering for a long time. But it feels good to finally get it into the light. To not be afraid anymore of feelings and labels. We were never meant to hide, to live a life in the darkness. It is a great grace of God to call us out, to take our shame and our sin away from us, because in Him there is no more condemnation. He has seen our deepest struggles, our biggest hurts and darkest sin and He is not afraid. He has never once left us, nor forsaken us. He is with us and working in us even when we don’t see it or believe it.
We are walking towards healing, hoping that doctors and counselors can help us find a way out, but ultimately I feel like God is trying to push us in towards Him. When life starts falling apart, who will repair you? When circumstances are too heavy, who will shoulder the weight? When the unknowns and sufferings become more than you can bear, where do you turn?
Over the years we’ve turned towards many things, but the Lord is gracious to continue beckoning us to Himself. For He is the only one who can fully restore, heal our soul and give us rest. Even if the sickness never leaves.
I am praying that you too would feel free to step out into the light, to stop hiding and hurting in silent. You are not alone and I feel that more than ever. God loves you and He cares about you and I pray that He would speak to you today and reassure you that He is good and He is good to you. Your suffering, your sickness, your hurt, your pain, your sin, AND your shame DO not define you. If you are a child of God, whose soul is bought and paid for with the blood of Christ, your identity is no longer in darkness. Let go of all that you are holding and lay it openly at the feet of He who paid it all for you.
I’m Sarah Jean, a midwestern girl just writing about my walk in faith. I love pizza, dog snuggles and my husband B. I want to encourage other women to know that they are never alone.