The Diagnosis I Don’t Write About (Until Now)

I started blogging in January, and in the nearly three months I have been blogging I have been very upfront about my chronic pain and illnesses and how they affect my life. 

I have also mentioned, at least in passing, my long struggle with generalised anxiety disorder and panic disorder. Other than my Chiari Malformation, which I was diagnosed with in eighth grade, my anxiety is the condition I’ve been diagnosed with the longest, and so I’ve learned to be open about it. 

But there is one diagnosis I have not written about openly, and that is my diagnosis with Bipolar II Disorder, which I received late last August. 

The more I don’t talk about it, the more my bipolar feels like this big secret, this heavy weight. But honestly, most of this is self-imposed. I was so afraid of all the “what ifs”, of all sorts of imagined judgements, that I did not allow myself to be an advocate for bipolar disorder, like I attempt to be with my other conditions, that I have never written about my bipolar. I let it be the elephant in the room, something I let my doctors treat but that otherwise I never talk about. 

But I believe it is something we should talk about. Mental illness is often comorbid with chronic pain. Me hiding my bipolar disorder diagnosis doesn’t help anyone. And if you’re afraid to talk about a particular diagnosis you’ve gotten…You’re not alone. But your mental health diagnosis is not shameful. It is not something that has to hold you back from a job, or parenthood, or a full life. It’s just something else that needs to be dealt with and treated, just like any illness.  

My bipolar disorder, just like my Chiari Malformation, my Mast Cell Activation Syndrome, and my other disorders, doesn’t control me. Sure, it is definitely hard some days, and it is something I have to treat: just like any condition. But by acting like it’s something shameful, I actually only hold myself back from getting good treatment. 

I have found a good treatment plan for my bipolar disorder, thanks to my doctor and therapist. It didn’t come overnight, and my fear of the stigma was a big reason why. I have never had a problem taking medication for my chronic physical illnesses, but fought having to take medication for my bipolar. I treated it like a personality weakness, something I could power through, rather than what it is: an actual medical condition. Finally, with the support and urging of my family and friends, I stopped fighting my need for medication and counseling. Thanks to them, my bipolar is incredibly well-controlled, and my treatment plan helps me to be my best self. 

I am finally sharing openly about my bipolar diagnosis because I do not believe it is a diagnosis that is shameful. If any of my friends were to share with me that they had bipolar, even before I had gotten my own diagnosis, I would have accepted them fully, asked how I could help, and not treat them any differently. So why would I not talk about it myself? I cannot talk about how much I value honesty and vulnerability–two things I value most in the world, as a writer, minister, educator, and person–if I am not willing to be honest and transparent about all the conditions I’m being treated for. 

People with all sorts of chronic illnesses, both physical and mental, thrive in all sorts of professions. We are writers, teachers, business owners, scientists, advocates, and much, much more. And if I believe that bipolar is nothing to be ashamed of–which I fully do believe!–then I need to practice what I preach, and be open about my own diagnosis.  It is a diagnosis I am happy I got, because it has led me to effective treatment which therefore helps me live a more healthy, well, happy life, where I flourish in all my roles. 

Finally, I also believe, as a Christian and a Christian leader, that mental illness is nothing to be ashamed of, because we all are created in the image of God. Mental illness is exactly that–an illness, not a personality weakness or a punishment from God–and we should treat mental illnesses like we do all illnesses: honestly, with dignity and respect for the whole person for whom our illness(es) is only a small part. 

Replacing Guilt with Grace with Chiari Malformation 

I am a naturally guilty person. Feeling guilt over situations is my first reflex. I feel very easily like things are my fault, and that I should have done better, tried harder, somehow foreseen whatever situation I made a mistake in. 

This is only compounded–or maybe caused–by my lifelong chronic illnesses, both physical and mental. I logically know none of them are my fault; this is how I am wired, how I was born or developed or whatever. But the guilt still flares up more every time I go into a flare. When I have a horrible Chiari headache and still go into work but am not my normal peppy, bouncey self, my first reflex is to apologize. I apologize not just for what I do, but for who I am. Guilt makes me feel like a mistake, like I am fully defined by my illnesses and good for nothing else. 

My last post was about control; what I can control, and what I can’t. My illnesses, as I wrote, are something I can’t control: but what I can work on controlling is my reactions to my illnesses. I can work on moving from a place of guilt to a place of grace. 

Grace for myself is probably the hardest grace I have ever experienced. When I make decisions, especially decisions around my illness, I feel intensely guilty. Recently, I had to make one of my hardest decisions yet: leaving a job I loved for another, my health and need for health insurance being the reason. My first reaction was so, so much guilt. 

Then, all the stress from that decision sent me into a series of flares, and temporary illnesses–a bad cold and a bad stomach flu–and a Chiari flare on top. That meant that over the weekend, I was pretty much good for nothing, and my wonderful husband and in-laws took over a lot for me so I could rest. I am not going to lie: guilt was my first reaction there, too. But since in 2017 my goal is wellness, I decided to take a deep breath, accept the help, and consciously focus on giving myself grace. I have to let myself be ill, because I can’t control it, and not feel guilty about it. 

There’s a powerful Christian song by Matthew West called “Grace Wins” that really helps me in my guiltiest moments. I actually have switched to listening to a lot of inspirational music this year and I have actually found that it has helped me tremendously in my chronic illness journey to wellness. I am going to write a post shortly about Christian songs that help me through my Chiari battle, if that’s your belief system and that helps you too (if that isn’t, that’s perfectly fine! You can still have grace with yourself and not be guilty about your chronic illnesses.) 

Here is a section of the lyrics:

There’s a war between guilt and grace, And they’re fighting for a sacred space But I’m living proof Grace wins every time

No more lying down in death’s defeat, Now I’m rising up in victory, Singing, hallelujah, Grace wins every time. 

This song helps me see my life as precious and sacred and important to God. I only have one life, and I could let it be ruled by guilt. It would be easy for me to let every single one of my decisions be motivated by feeling like in not enough, that I have to prove myself to people, that I can’t show others my cracks and flaws, that illness is weakness. It helps my grace define me, not my guilt, because I remember grace is stronger, and I am stronger. I can rise up after a bad day. My bad days do not define me. Grace defines me. I can give myself grace, remember to be strong, and triumph the next day. 

But moving from guilt to grace is not easy. It’s one of the hardest things I do. It involves a complete mental shift, where I acknowledge the guilt and remind myself–sometimes out loud–that, even if it is a mistake I made, I am already forgiven by God for it. And if it is illness related, then it’s not even something I need to ask for forgiveness for, because it’s not my fault! I don’t need to feel guilty about my illnesses, because there’s nothing guilt can do. 

How does grace look in practice? To me, it means making choices that sometimes mean putting my health first, even if for some reason I feel like there’s an unconcious “should” that makes me feel guilty. I have a great therapist who gave me a great challenge to get rid of unconcious “shoulds” in my mental vocabulary. I have a lot of them, and they all lead to guilt.

 For instance, I “should” work all day, instead of taking a split shift job where I come back and nap and take care of myself, then go back in. I. “shouldn’t” nap, because I am 25 and should be a healthy career woman. I “shouldn’t” let my husband watch our daughter for a bit so I can take a break, because moms shouldn’t be chronically ill. 

These “shoulds” are all ridiculous, and they don’t live in reality. I am the way I am, and I firmly believe that I need to have grace and love myself, exactly as I am, illnesses and all. And to do that, I need to have grace with myself. I need to do things to build my self-esteem. I need to have honest conversations with people in my support system, people who love me unconditionally, about what my health struggles are and how they truly affect my everyday life. I need to have honest conversations with my doctors and take medications that help me, instead of feeling like I “should” be able to power through my conditions without medication. 

I need to look in the mirror, and have grace and love for what I see. This body isn’t perfect. She is often sick. But she is mine, the body God gave me, and all people are made in God’s image. Even the chronically ill; even me. 

This is also important because guilt makes me sicker. It builds up inside of me and becomes stress, and pushing, pushing, pushing because I am motivated by guilt, not grace, often causes me to totally neglect true self-care, have a meltdown, and end up in a long flare. Guilt is a counterproductive emotion.  

I am human. I make mistakes, big and small. I am chronically ill, and sometimes I am not able to do what I would like to do, and sometimes must let things go so that I can keep being a healthy, whole person. And the key to this is grace: grace with myself. I forgive myself, I accept myself, and I love myself, chronic illness and all. 

Having my Conditions vs. My Conditions Having Me 

In 2016, I didn’t know what was causing me constant chronic pain and myriad other symptoms. But even–especially, actually–before I had names for my conditions (Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Chiari Malformation), my conditions had me in a chokehold. Even when I was doing other things, thinking about my pain consumed me. When would it flare up again? Was I a burden on others? How long would I be able to keep doing the things I loved? I let the pain take control: of my thoughts, of my pain, of my life. 

I still pushed through, and I did accomplish some significant things. I graduated with my master’s degree. I started my first professional job. I was a mom and a wife. But I was in pain first. My identity as someone who was in pain and sick a lot became my primary identity. Everything else mattered, but it was secondary. I felt like a slave to my pain. 

My correct diagnosises began in late 2016, and so did my turnaround. It’s not that my symptoms got all that much better, especially not right away: though having the right management program definitely helps tremendously. But the number one most important thing naming my illnesses did was strip them of the massive amounts of power they had over my life. My enemies were no longer unknown, and I took back the reins, took back control. 

I never really thought about control until fairly recently, when my brother started talking to me about how everything in life boils down to control and people wanting control. There are many, many things in life we have no control of. For the most part, chronic illness is one of those things. 

I cannot control when my diseases are going to flare up. This is just something I must accept. Sure, there are sometimes preventative measures I can take, but I sometimes flare because of the weather, noise, stres…Nothing. I cannot possibly minimize all factors. 

What is in my power to control, though, is what I focus on. Do I focus on the unpredictability and uncontrollable nature of my illness, which leads me to feel weak and powerless? Or do I instead try to give my conditions as little attention as I possibly can, and focus on what I can control? 

It all started small: with a list. A list of things that made me happy. There were big things on the list, like my relationships with my family and friends; my relationship with God; meaningful, fulfilling work. And there were also lots and lots of little things: freshly painted nails, blueberry coffee, Christian music, reading certain books of the Bible.  

From there, I decided to make decisions that maximised happiness, and I found that plenty was in my control: little things that made a big difference. I was in control of making sure I painted my nails once a week, made myself coffee, cultivated relationships with my family and friends, went to work even when I had a bad Chiari headache because I know I love my job and it’s meaningful to me even on the bad pain days. I listen to positive music and internalise the messages; I try to read my Bible most every day. 

Some days I have less control: I can’t even get out of bed. But when I’ve been focusing on how much power I truly have on the other days, something amazing happens for me: I feel powerful, even on the days I can’t get out of bed. My overwhelming pain feels temporary, and I know it is not all there is to me, even when it is all I feel. The positive messages I send to myself on all of the other days push me through the really bad days. And even on those days, I am not controlled fully by my conditions. They hurt me, they affect me, sure. But I am always stronger. 

This is the first post I am writing as part of a series on changes I have made in order to change my perception on my illness and therefore how in control I feel: not of my illnesses necessarily, because they are constants, but of my life that my illness is a part of. My illnesses provide challenges, constraints, and boundaries, but I am intuitive, strong, and wise. I am so much more than my illnesses. I have them now, and I am doing everything in my power to keep from them having me. 

Psalm Sunday #4

For today’s post, I’m going to do something I don’t normally do. I pasted the entirety of Psalm 34 here for us all to read together. I normally will just include selections, and if I wrote about the whole passage, will include a link. But Psalm 34 really resonated with me this morning, and I have a feeling it might with you too. So read these words below, and let them really wash over you. Then I will return with my thoughts on them. 

I will bless the LORD at all times; his praise will always be in my mouth. I praise the LORD — let the suffering listen and rejoice. Magnify the LORD with me! Together let us lift his name up high! I sought the LORD and he answered me. He delivered me from all my fears. Those who look to God will shine; their faces are never ashamed. This suffering person cried out: the LORD listened and saved him from every trouble. On every side, the LORD ’s messenger protects those who honor God; and he delivers them. Taste and see how good the LORD is! The one who takes refuge in him is truly happy! You who are the LORD ’s holy ones, honor him, because those who honor him don’t lack a thing. Even strong young lions go without and get hungry, but those who seek the LORD lack no good thing. Come, children, listen to me. Let me teach you how to honor the LORD : Do you love life; do you relish the chance to enjoy good things? Then you must keep your tongue from evil and keep your lips from speaking lies! Turn away from evil! Do good! Seek peace and go after it! The LORD ’s eyes watch the righteous, his ears listen to their cries for help. But the LORD ’s face is set against those who do evil, to eliminate even the memory of them from the earth.  The righteous have many problems, but the LORD delivers them from every one. He protects all their bones; not even one will be broken. But just one problem will kill the wicked, and those who hate the righteous will be held responsible. The LORD saves his servants’ lives; all those who take refuge in him won’t be held responsible for anything.

(Psalms 34:1-‬22 CEB)

This was certainly a week where I had “many problems”; I would not call it a stress free, easy week at all. I finally got home after an incredibly stressful Saturday where I was robbed and both my husband and my cars broke down in different states. A third car broke down on us. My phone broke. We didn’t have childcare for two days. I had to deal with credit card fraud. I started a new job. I found out we are going to have to switch primary care doctors because mine no longer is going to take my insurance. I had a major medical test and found out that I still have a serious brain condition that is only improved with surgery. 

Even a few weeks ago, all of these events in tandem would have been enough to majorly stress me out. I have been struggling with anxiety and worry my whole life, since I was a child. And yet, somehow, I have had an incredible sense of peace this week. I’ve been able to use positive coping skills. I have felt extremely happy and well all week. It as an amazing week because of this. 

How did this transformation happen? I’m honestly not sure, but I am confident it is the Holy Spirit acting in me, not myself. I am confident that God saved my life last Saturday night. 

It’s probably cheesy, almost like something that happens in fiction and not real life, to say that after what happened Saturday, it was like a switch was thrown to where I could really trust God fully and live my life differently. The Holy Spirit took over. And I may have suffered this week, but I have been consistently full of praise, because I know God is with me. I am more aware of God’s presence in my life than I ever have been. 

I am sure the week ahead will hold struggles: for you, for me, for all of us. God does not promise us a life of ease and free of problems, but quite the opposite: we are promised a life of picking up our cross daily and following Christ. But what we are promised is that the Lord will listen every single time we cry out; and for that, we can praise God in every single circumstance.