Dear Patient,
Please forgive me. I’m sorry. I didn’t understand. I thought I did, but I didn’t.

Until now. Now I understand.

I’ve always been filled with empathy and lots of compassion. That’s why I went into a “helping profession.” I wanted to help. I’d always been told I was good at listening. Now I know that’s only part of the solution.

While I’ve always been empathic and cared for my patients, I never really understood, the way I do now…now that I’ve been on the other side of the desk.

I never fully appreciated just how hard it was for you to pick up the phone, dial my office, and inquire about making a new patient appointment. It’s that last straw of desperation that prompts the call…when you don’t think you can make it one more day without help. By the time you muster the courage to dial the phone, it is an emergency, and when you call, the worst thing that can happen is for you to be put on hold because you need help NOW. Now I understand.

When you get put on hold before your appointment gets scheduled, fear grips your heart and you almost hang up. I know that any delay is like an “almost-rejection” and you’d rather be the one doing the rejecting than having someone else rejecting you, when what you’d really love is for someone to hold your hand and assure you “it’s going to be alright.” Now I understand.

Fear of unknown procedures can wreak havoc on your mind, your emotions, and your bodily functions. Of all the spectrum of medical procedures, some are painful and aversive and such that we wouldn’t inflict on our neighbor’s rooster that wakes us at 4am on the only day we get to sleep in, while others are no worse than a good teeth brushing. Yet the unknown nature of it all magnifies them all in our mind and makes them worse than they need be. I do my best to explain them to you in advance to put your mind at ease, but just how do you explain shoe tying to a blind man? And sometimes you are so anxious that you cannot remember what I have said. You see my dilemma? I didn’t get it before, but now I understand.

Oh how many times I’ve had to deliver the dreaded news of the much-anticipated diagnosis after the tests were run. The waiting is the worst, isn’t it? I didn’t realize that before, but I understand now. You likely visited with several doctors before you walked through my doors, each time hoping “maybe this one will be it.” You’ve likely grown battle weary in your search for answers as you’ve been alternately tossed between hopeless to hopeful. The time between “it might be” or “it could possibly be” and “it is” or “it isn’t” feels like an eternity that is only spanned while dragging lead bricks tied to your toes across the Sahara in search of water. Now I understand.

 

The unknown can be terrifying. Knowing that something is wrong, but not knowing what, and not being able to do anything about it until you get that answer can be an utterly helpless feeling. Somehow once we know what we are dealing with we can start to heal, but the interim of wondering and what-iffing can in many respects be worse than the actual diagnosis. I didn’t fully understand that before, but because I do now, I try very hard to shorten that wait time for you. Even if ultimately I have to deliver bad news, I’d rather you know sooner rather than later what you are dealing with so you can start to formulate a game plan to help yourself and your family cope. Now I understand.

Yet until I went through it myself, I couldn’t relate to what it was like to actually hear the words. How desperately you try to pay close attention to every word the doctor relays, and yet your mind simultaneously goes blank and becomes overwhelmed with tornadic screaming questions and every fact, myth, hypothesis, and horror story you’ve ever heard about the condition just offered. I’ve been there. Now I understand.

Despite my every attempt to create a safe environment, you maintained a brave expression in the face of such ominous news. Yet you may have crumbled under the weight of it all by the time you reached your car or the safety of home. Maybe you were overcome by silence and disbelief as you tried to process the news you had heard and what this would mean for your future. Your precious future—this had never been part of your picture-perfect future. Now I understand.

I didn’t understand how hard it was for you to share your pain. Quite possibly you wanted to tell everyone so that you wouldn’t feel so alone, but you didn’t know what to say. Even when you did, they didn’t know how to respond. And at the same time you probably didn’t want to share this newly delivered news because there were so many more questions you didn’t have the answers for. Word spreads fast, and it was likely burdensome for you to have to respond to all the calls and messages, when word spread across the grapevine, yet at times you didn’t want to be at their beck and call to fill them in on every nitty gritty detail. Now I understand.

I didn’t understand just how much you were hanging on everything I said as well as what I didn’t say to you. You probably replayed every word in your mind and wished you had asked more questions, but didn’t know what to ask. You likely double guessed what I meant by certain things. Even though I told you not to, you probably googled way too much to keep things in perspective for your personal situation because you craved assurance, and normalcy when others began telling you every horror story about their friend’s uncle’s wife’s cousin’s situation. Now I understand.

I didn’t understand how people now treat you like a label after word has spread. Now every “How are you?” is tinged with a greater underlying meaning, so if you don’t want to have to go into a long diatribe with every detail, you have to have a truthful, albeit abbreviated response ready. The well wishes are appreciated, but a normal conversation about the weather, price of gasoline, and change in city officials is preferred over the looks of pity, or worse yet, avoidance because they don’t know what to say and are afraid of saying the wrong thing. Now I understand.

I didn’t understand how overwhelming it would be to be referred to all those “other appointments.” I wanted to provide you with as many resources as possible to return you to good health, but I didn’t realize that initially, you were doing good just to process a new diagnosis. Initially, you just need time to breathe, to realize you aren’t going to wake up from this bad dream, and that this is your new reality at least temporarily. Now I understand.

I didn’t understand how confusing it was to give you choices in your course of treatment when all you really wanted to know was “if it were me, what would I do” because you figured that was the safest, surest route to take. I didn’t realize how stressful it was for you to be presented with options, because every option necessitated a response on your part when you were doing all you could to do the very next thing you absolutely had to do. Now I understand.

I didn’t understand why you looked at me as if I was either going to lock you up, or as if I was keeping things from you. You wanted assurances, some that can never be given. Was there more I wasn’t telling you? While I’ve said medicine is more of an art than a science, there is still so much more we don’t know that we have to entrust into God’s hands. I wanted to give you more information. I wanted to assure you. But I’m not willing to lie to you to do that. Now I understand.

I didn’t understand how being told certain things would spark your anger. Like being told you were brave. People wonder how you make it through the things you do, but you’d like to offer back to them, “What choice do I have?” knowing you can’t just curl up into a ball. You’ve got to go through with the evaluations and the treatment whether you really want to or not, because, well, the other option is even less attractive. You not only want to survive, you want to thrive. Now I understand.

I didn’t understand that when you said you were tired, that barely described the mental, physical, and emotional exhaustion you experienced. Some days required all you could muster to brush your teeth or take your vitamins, and then on some days, you just couldn’t. Now I understand.

I didn’t understand how hard it was for you to accept help. You were so used to being the go-getter, the one others called on to get things done. You both needed the help, yet really longed to be in a position of not needing it. You were grateful for the tangible displays of love and support, and hoped that if the tables were turned, you’d do the same thing for them. You wondered how you could repay such kindness, and yet at the same time, even that added another level of burden you weren’t sure you could bear. Now I understand.

I didn’t understand how your situation left you feeling left out. People avoided you out of fear of saying the wrong thing or not saying the right thing. Their lives continued while this became a new full-time unwanted job for you. People offered to help, and yet when you got desperate enough to ask for it, you often found out they were too busy. It left you feeling alone and more determined to do things yourself. Now I understand.

I didn’t understand how all-encompassing this was for you. It affected you physically, mentally, cognitively, emotionally, and spiritually. Some days you felt like you could handle this and take on the world too, while other days left you hoping you’d wake up from a bad dream. Anything and everything could trigger a rapid shift in mood. You experienced guilt that your family had to endure your suffering and treatment. You know you took wedding vows which included for better or worse, in sickness and in health, but you had no idea how those vows would be put to the test. Now I understand.

I didn’t understand how this changes you forever. Even with appropriate treatment, it’s always in the back of your mind. You hold your breath before every follow-up appointment or repeat scan. You wish that it could all be a memory, and yet at the same time, you never want to be taken off-guard again. Now I understand.

Scripture tells us that God works all things together for our good (Romans 8:28). Sometimes when we are in the middle of the situation, it can be hard to see or trust that any good can come out of a situation. But that is when we must trust God and His promises to be true. Now that I’ve functioned as the doctor, the caregiver, and the patient, now I understand. God really will use our pain for good and for His glory. If I hadn’t gone through what I’ve been through, I wouldn’t be in the position I am today to say, Now I understand.

My prayer for you is that you, too, will come to a place where you can see how God did get you through, and how He will use even your pain for good. I pray that you will lean into Him, because even when I don’t have all the answers you want or need, I know the One who does. It’s on Him I lean, and I pray you will too.

With a hope that prevails,
Dr. Bengtson the neuropsychologist, caregiver, patient, and friend

 

 

 Hope Prevails Book and Hope Prevails Bible Study offer hope for overcoming depression.

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Hope Prevails: Insights From a Doctor’s Personal Journey Through Depression and the new companion Hope Prevails Bible Study help the reader understand: how depression comes to be, recover their joy, reclaim their peace, and re-establish their true identity, while knowing their worth, remembering their secure destiny, and being confident that nothing separates them from God’s love.