by Melinda Vergiever Inman
My brain used to be sharp, my prospects thrilling. But then, when my first novel was in production in 2013, I suddenly became very sick.
The year had been difficult, with my mother-in-law’s cancer worsening and my husband traveling back and forth to help. When she passed away, we were grief stricken and heartbroken. Therefore, a couple of months later, when I became sick after passing my manuscript to my publisher, I figured I simply had burnout and scheduled a week off.
This turned into two weeks. And then a third.
I grew worse. I was bedridden. However, I looked entirely fine on the outside, so hardly anyone believed I was sick. Why they would react that way still astonishes me. Finally, I visited a doctor at the clinic. She put me on an anti-depressant, behavioral therapy for whatever was causing my “depression,” and then sent me away for six months and then for a year.
I was told that I’d get over it. However, I didn’t. I had been depressed before, and this certainly wasn’t depression. No one listened.
Pressing on with whatever I could accomplish, I completed the marketing prep and photography for promoting my novel, all while feeling worse than I’d ever felt in my entire life. It’s impossible to detect this, but these photos still remind me of feeling totally depleted and sad that it was happening in this manner, this achieving of a dream.
Because I “looked just fine,” I was often asked if I had simply decided that I didn’t want to do most of my work anymore. I got the side-eye. I felt as if I had let everyone down.
Then I visited a doctor that I had seen regularly for about eight years. Privately, she had wondered for a while what might be going on in my lungs and was already studying my immune system. When I came in, she was stunned by my appearance. Something was wrong. She drew up a requisition of tests and had me take the list back to the clinician, advising me to add any other tests that I wanted, since I knew my body best.
Finally, I felt seen, heard, and empowered.
Back I went. When I handed the clinician the requisition, her brow wrinkled. When the results came back, the guilt and shame on her face were startling as she looked up at me when she came into the examination room. She knew she had let me down.
Obtaining a diagnosis required four more years and a doctor trained at Johns Hopkins. Sadly, it still takes years to get a diagnosis. My diagnosis included several raging autoimmune diseases.
Eighty percent of all autoimmune diseases occur in women. Autoimmune disease is considered an international women’s health crisis by the World Health Organization. As a result, care has improved drastically, and diagnoses are now completed sooner. (Link: https://www.aarda.org/)
Each person has a unique experience. Most autoimmune diseases involve many pieces coming together, often induced by stress or injury. A bad fall that tore my hamstring in 2011, followed by two automobile accidents, all in one year, coupled with our heartbreaking loss, may have been what brought my illness to the forefront.
The first symptoms had begun in 1989, but no one knew it was part of a body-wide, long-term illness. Each piece was minor and manageable, certainly not related to each other, my doctors assumed. In 2013 they all came together. This is a typical autoimmune pattern.
There are over one hundred different autoimmune diseases. Each person’s body attacks itself uniquely, looking like no one else’s disease. Plus, these diseases range from Lupus to Hashimoto’s to Rheumatoid Arthritis to Celiac Disease to Multiple Sclerosis and more, more, more. This is why diagnosis is difficult.
I have four of these awful beasts.
As a sixty-year-old woman, this entire experience felt like so many other things I had gone through while growing up before Title IX. Yes, we wanted to be able to play sports in school, just like the boys. Yes, we wanted our questions to be answered in class, rather than ignored by our teachers. No, I didn’t want to abort my baby when I became pregnant at seventeen—a pro-life choice that no one wanted me to make just four years after Roe v. Wade.
My emotions and my sickness were minimized and not taken seriously, as so many things were ignored concerning young girls and women then. It felt like growing up in the sixties.
When a woman says that she is sick, she is sick. When she says that she wants to keep her baby, she wants to keep her baby. When she has a God-given gift to write or sing or speak, she wants to be taken seriously.
Thank God for sending Jesus, a man who took women seriously. He healed women of hidden diseases. He ate in their homes. Women followed him, he welcomed them, and they trusted him. Women were the first to see him risen, and he sent them out with the most important news ever heard. Women proclaimed the gospel, carried the letter to the Romans, instructed men, and provided for the early church.
If the world treated women like Jesus treats us, diagnoses and cures would come quicker. I’ve never been closer to Jesus than I am now. At first, he was the only One who believed me, who knew what was going on in my body. He led me to doctors who would care for me properly. He helped my family and friends to understand. He is my companion in suffering. His nearness in pain grows increasingly dear. He is precious in this. He never minimizes or ignores.
I don’t understand the timing or the whys. I see glimmers of answers and possibilities, but mostly I see him, Jesus himself, far more clearly through the awful and complicated mess of being chronically ill. In all of this pain, he is good.
Melinda Vergiever Inman is an award-winning author of faith-filled fiction who wrestles with human brokenness, chronic illness, and the storms of life. Find her at https://melindainman.com as well as at https://www.amazon.com/Melinda-Viergever-Inman/e/B00GFYI0RU/ref.
Such a beautiful, important post. Jesus sees us. I am so glad you have found those who have listened and helped, Melinda. It is awful to feel awful and have no one to help. I went through a season of severe depression due to physical problems that were minimized. But Jesus saves in so many ways. He brought me through. Thank you!
I am so sorry you had to experience that, Pam. It was really rough knowing I was incredibly ill, realizing how small the window of treatment is for turning it around, knowing that we’d passed that window by the time they diagnosed, AND ALSO not being believed or understood by so many people. I know how you felt in that. It would have been very easy to become deeply depressed. I’m so glad the Lord carried you through that dark time and that you’ve recovered.
Stunning in so many ways,. Thank you for telling your story, May you inhale God’s grace and exhale living fully alive by it.
Beverly
Beverly, thank you for that blessing and that reminder. Breathing in God’s grace sounds like a daily habit to make a normal part of my life.
I’ve never known you completely healthy since we began connecting via our blogging communities. But in that time, you truly have become one of my favorite blogging friends, and I so admire your writing talent! Despite your struggles with health, you have been consistent, and you have completed great works in your novels. That is amazing! You never have pointed the finger at God or have shown anger towards Him. He has drawn closer to you in these times. You are experiencing such intimacy with Christ. It’s one of life’s greatest paradoxes – that suffering can produce a nearness to God. Still, I will pray that your suffering ceases and the mercy of God heals your body. Keep writing, my friend. You are touching many lives. Thank you for being so transparent.
Lisa, thank you for your many uplifting and kind words and encouragements. When I was younger, I did have times of being mad at God over difficult circumstances that required many lessons. I knew so little about the Lord then. But, God used those trials to bring me out the other side with a deeper relationship with him. By the grace of God, all the symptoms of my autoimmune diseases came together at a time when I had acquired some degree of maturity as well as much Scripture in my mind and my heart. They anchor me to Jesus who inhabits the words through his Spirit. Pain has made him ever more dear, because he is so closely acquainted with pain, even the worst kind of excruciating agony. He knows exactly how I feel. He inhabits my body with me through his Spirit, filling me, and I can cry out to him. He knows. He’s here. What a blessing he is in trial! Thanks again, Lisa!
Such an important topic. Melinda, I am praying for you. A very close friend of mine is struggling with an autoimmune disease right now, and it was really difficult for her to get a proper diagnosis. Thank you for touching the lives of so many with this powerful article.
Jessica, I hope and pray your dear friend gets a diagnosis soon. It is SO DIFFICULT. The problem is the unique way each body attacks itself. That brings together symptoms that overlap for many illnesses simultaneously. For instance, I have a combo of Rheumatoid Arthritis, Lupus, Interstitial Cystitis, Raynaud’s, and a lung problem we’re STILL working to diagnosis, but which involves Bronchiectasis. All of that required YEARS, so many tests, so many doctors. I highly recommend that link in the article for your friend. It’s the research website for ALL autoimmune diseases. I think it would greatly encourage her and provide many trustworthy scientific sources where she might find information that clarifies things for her.
Autoimmune diseases come in all sizes and kinds. I see your photo and think, “She’s so pretty.” And I read your posts and think, “She’s always so kind. Wish I could meet her in person.” I would never know of your suffering. Thank you for sharing with us and giving us opportunity to pray for you.
Melissa, your words are so touching! Thank you! Like I mentioned, the photos remind me of that dark time of feeling so bad and not knowing what was wrong yet. I definitely didn’t feel pretty at the time. Thank you for reminding me of the beauty of the moment. As to kindness, that’s by the grace of God. Because I always feel bad, cranky is always a possibility. But, the Lord helps me to grow to become more like Jesus — thankfully! I would love to meet you, too. Your words always bless me so much.
What a beautiful testimony of God’s faithfulness, Melinda! I pray God will continue to give you His peace and one day bless you in His presence with the knowledge of how He worked in the lives of others and glorified His Name through the use of your sicknesses.
Amen to that, Emily! One day it would be such a blessing to know that. When we write and speak truth, we engage with others on a heart level that impacts their lives for good or for ill. When we glorify the Lord in even hardship and pain, when we’re real and show our struggles so that others know that we’re all broken and that they are not alone, when we speak the truth, the Lord is glorified and the way to him is made clear and plain. The truth removes obstacles. Thanks for your words, Emily.
Bless you dear for sharing this journey with us. I have 2 autoimmune issues myself. They are so frustrating to deal with and hard for others to understand. Praying for you my friend. 💕
I never knew that, Yvonne. These can be so challenging.. I hope you’re able to cope and to adjust, especially with all the traveling you do. God bless you, sister!
What an amazing story. We can all point to that moment when we needed someone to hear us, but they would not. Thanks for telling your story. God bless!
That’s so true. All of our stories can appeal to a broader group for that very reason. There are common themes in all of our human experiences. Being heard is one of those. Thanks for pointing that out, Nancy.
Dear Melinda, this is a heartbreaking story, but for Jesus. Thank you for sharing all of it, the misdiagnosis, the doubting and questioning of others, the shame and guilt and the pain, the chronic pain. For I know this story is all too familiar. I have loved ones who have walked in very similar shoes. But you are truly an inspiration to me, because despite it all, your faith burns ever brightly. May God continue to speak through you and strengthen you in this powerful work you do!
All of the negative treatment and harmful strategies are so common that it’s downright shocking. Where we now live there is a higher standard of care, and I’m glad, but I still see similar things here. I’d like to think it isn’t because we’re mostly women who are ill, because one male reader told me he was treated similarly.
But God is so good! His love carries us through these hurts. He’s also brought more gifted writers and podcasters into this arena, and they’re speaking to these types of pain as well as the actual pain of the illness—K.J.Ramsey is one. I’m thankful that the Lord uses whatever means to turn me back repeatedly toward him for comfort and support. Thanks so much for your kind words, Melissa.
Melinda, I knew some of this already, but I appreciate this raw and real emotion. What a struggle. I’m glad there are now dear ones who understand and support you. Your writing is an obvious gift from God. YOU are a gift, especially to your family. He is using your experience, your frustration, the injustice, your pain and sorrow for His glory. He has given you hope and strength. Keep it. Depend on it. Others will be blessed through it.
Stephen, thank you for these uplifting words: “ He has given you hope and strength. Keep it. Depend on it. Others will be blessed through it.”. In light of ongoing pain and fatigue challenges, your words are a great reminder to keep my eyes and my trust in God , the strength he gives, and the leading he provides. Thank you for the reminder! God bless you!
Stephen, thank you for these uplifting words: “ He has given you hope and strength. Keep it. Depend on it. Others will be blessed through it.”. In light of ongoing pain and fatigue challenges, your words are a great reminder to keep my eyes and my trust in God , the strength he gives, and the leading he provides. Thank you for the reminder! God bless you!
This post came at a most important moment, as I lay her on the hospital. I am here because of pneumonia after almost 3 months being sick. And Today, I wasn’t heard and so I yelled. I shouldn’t have to raise my voice, but I will. I went 4 years of unanswered questions and frustration before being diagnosed with stage 3 lymphoma, thank God it was slow growing. Like you, I had back to back trauma and other extreme stresses. God led me to the doctor that saved my life. And tonight as I get ready for sleep, I know that I am being heard without raising my voice and I will soon be ba k on track with the direction God has given me. This post was also affirmation of that. God bless you!
Nedra, I am so sorry for what you’ve experienced, and glad that you were finally diagnosed. Peace to you, and may God bring healing to your body. – Michelle Van Loon