I never thought I’d be someone who struggles with chronic pain
(the following entry is written anonymously by a mom in my tribe sharing about her daily battle with pain and her stepping into using her voice for healing and support)
I’ve always had headaches. It’s just part of who I am, and my momma used to tell me to make sure I ate well and often (as we thought they were related to blood sugar). I remember I would throw up in 5th grade due to them fairly regularly, and then I grew out of that phase. I continued just having occasional headaches, only needing ibuprofen to deal with it. Even right before becoming a mom, when I began having ocular migraines (seeing an aura prior to the headache), I didn’t need much for the pain. The pain was worse, and the vision problems were scary, but after being told it was normal, I moved on and didn’t get on a preventative medication or even use the abortive one I was prescribed very often.
My true difficulties began in February of 2017 when my kids and I all got the flu. At the time, they both needed me in the middle of the night if they woke up. My daughter was still somewhat adjusting to our family changing when we adopted our son in 2016. I did not do a great job of taking care or myself during that flu apparently. I remember not eating very well and not wanting family or friends to come over to help for fear that they’d get sick. I was doing it all myself, which was something I was comfortable with. I think I really like being the only one to take care of my kids even more than some, because I did not get the first years of their lives with them (as they were adopted as toddlers). So I tend to want to do it all, even if it’s hard, especially for the sake of our parent/child bond. It’s my privilege and my job as their mom to do it.
So about a week or so after the flu left us, I began to get a headache. I just couldn’t shake it. My husband didn’t understand what was wrong with me because normally I got better faster from headaches or migraines. Five days later, it was worse than ever, and I asked my husband to look at a small spot on my forehead. I figured he would dismiss it, but his eyes got big and he said, “That’s shingles.”
And hence my life changed.
Nothing has been the same since that terrible diagnosis. It started with horrific, debilitating pain during which I thought I was dying multiple times. As a professional therapist, I eventually recognized that I was having panic attacks with the waves of intense pain, so I utilized mindfulness strategies with my pain medications. It was brutal. I thought it would be gone within a few weeks, at least.
It has now been over a year.
I don’t have the intense pain that I had during that initial outbreak when the rash was active, but I have daily, chronic pain from the horrible virus of shingles. My trigeminal nerve was impacted, so the vision in my right eye is not great and my right ear aches often. The worst thing though is my ‘pain spot’ in my head; it is a bundle of angry nerves that apparently don’t want to heal yet from shingles. Post herpetic neuralgia is nerve damage; I just have to wait and see if it will fade away or if it won’t. There are preventative medications I take for the pain now, but there’s nothing that works for the pain spikes other than ice and rest. It is different from migraines in that way. It has also interplayed with my migraines terribly, so now they are worse than they were before shingles, and I do have to take preventative and abortive medications.
My children are wonderful. My home and job are amazing. My husband is my biggest supporter in life. My family is always, always there for me. However, it has been the hardest year of my life. And in the past I’ve gone through things that should’ve been much more difficult in my opinion. My close people know the events that I’m talking about, both emotional and physical things. Those things should’ve been harder, and I’m a little angry that this issue is what is taking me down. Chronic pain, as I have just now claimed it for what it is, has clearly been the trial I’ve been the most humbled by.
It’s been helpful to let my shame about this go and to start talking to people about it. I mean, people knew I struggled some physically but no one knew the extent of how much this has taken over my life. I’ve been evaluating lately: what exactly do I feel so ashamed about?
Clearly, I didn’t want to get shingles, and being the 5% who maintains the nerve pain (called post herpetic neuralgia) wasn’t on my to-do list either. I can usually talk about emotional issues relatively easily, and even with infertility, I found a way to share that journey with people. With this, the pain has been so intense for so long that I’ve recently noticed I have isolated myself in some ways. I didn’t want to bring others down, constantly complaining of pain; I couldn’t stand the thought of being that negative person. I also didn’t feel good enough to talk. I am at my worst, and somehow telling everyone all about that isn’t priority.
However, I am learning. I did not choose this, just like I didn’t choose other paths that I more easily processed with family and friends. Just because post herpetic neuralgia from shingles is not as easily measured as strep throat or something- that doesn’t make it less. It is an invisible pain, people aren’t going to know anything about what I’m walking through unless I tell them. And I have not wanted to tell people. I have wanted my interactions with others to be lighthearted and not about this draining thing. I have wanted to ignore it, but it will not be ignored.
I think others with ‘invisible’ pains will know what I am talking about here; it is extremely difficult to know how much to share before I’m oversharing. It’s like opening up a dam; I don’t want to open that up to everyone I speak to. Sometimes to even ask others how they are doing is near impossible with the throbbing in my shingles spot; I am so sad I can’t even hear their answer through the gnawing in my head. I’ve never been this debilitated before, and most people have absolutely no idea I even suffer.
I’ve watched primarily my husband (& my mom) see me change. Because at the end of each day, I can finally let go, and often times that means crying with an ice pack on my head. I cry so often in the evenings that I have stopped knowing how much is the pain and how much is my medication making me more emotional.
Both things make me cry; I can’t tell anymore. I am drained entirely, and I miss being me.
Side effects from medications are hard, but not as hard as the pain. I’ve never been so vulnerable to my loved ones, and they cannot fix the pain I am constantly in. My hopelessness in those moments turns to despair and depression. I have just now begun recognizing that I do have depression, especially during pain spikes. I don’t want to be the Christian who puts all their joy in circumstances; I have always known in my mind and heart that that isn’t the right thing to do. My body, however, has been failing me; I am not sure how to go through this painful season. I certainly don’t know how to coach others on how to help me through it. Humbling to my core.
I recently switched doctors, and my hope is renewed. There are certain friends (& of course family) who DO know my whole story and have walked me carefully and kindly through this whole ordeal. I’ve stopped asking God when it will be over, and now I’m asking Him what His purpose is.
And so, I wrote. I write today to validate the person struggling in silence. Maybe you can’t quite figure out how to let others into your story because it’s too sad, too awful to bother other people with. Let them in. Let someone in, not everybody in. Somebody or two somebodies or even three – they will support you in moments you think you can’t go on. Suffering in silence isn’t brave. It’s not the right thing to do or the kind thing, as I once thought, no matter the type of suffering. Don’t refuse anyone into your world, however hard it is. Claim whatever season you are walking through. “Hello, my name is ******, and I have had difficult, life-altering chronic pain for over a year now.” This is me, learning to accept my season. I didn’t want this season, and I didn’t ask for this season. However I better accept it. I’ve been refusing to for long enough, and that has gotten me nowhere.
So, my first step has been to claim it, to accept it. And to talk to my people about it-with a grateful heart for their loving kindness and patience. I know I can endure the pain, as I’ve been doing so. I just pray that this season of chronic pain does not go without the ability to touch someone else’s life. I want to give this to God to do what He will with it; I want it to produce something worthwhile if that makes sense. So with that, I give you my ‘rough draft’ of this year of pain. It’s not wrapped up with a pretty bow yet. The pain is still here and wreaking some manageable havoc, both physically and emotionally. However, just knowing I’m not alone in this and that I am loved fully through this has meant the world to me. And I won’t be seeking isolation from my loved ones anymore, no matter the temptation to protect them from this. Scripture is my refuge:
“He brought me out into a broad place; he rescued me, because he delighted in me.”
Psalms 18:19 ESV
“Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”
2 Corinthians 12:8-10