Navigating the World with an Undiagnosed Illness
By Marta | @sono_merta | June 24, 2019
My story begins with me going against my fear of doctors. I did everything right. When I woke up with a dull ache squeezing my chest, I made an appointment with a doctor at the university clinic. I didn’t procrastinate, I didn’t swallow an ibuprofen and ignore it. I chatted with a nurse while she stuck EKG leads all over my body. I didn’t run away when they stuck needles in my veins. And then I smiled gratefully when they told me everything was fine. Just a muscle strain. Stop carrying so much in your backpack. I was going to be just fine.
I continued to do everything right. I did light yoga and stretching. I cleaned all the half-drank water bottles from my backpack. But then the semester ended, and I was still in pain. I started my summer job with the nagging feeling that, instead of getting better, I was getting worse. So, I went to my doctor. He took x rays. Everything is fine. He sent me to physical therapy.
By the time school started up again, I was in even worse shape. I struggled through classes, the pain controlling my ability to concentrate. I knew this wasn’t how my story was supposed to go. They told me again and again that I was fine. But I didn’t feel fine.
They sent me to the rheumatologist. He drew vials and vials of blood. The moment the needle breaks the skin, something that had once terrified me, was now mundane. He took CT scans and MRI scans. I started having abdominal pain. He put in referrals to hematology, infectious disease, cardiology, and gastroenterology. I fasted so a camera could look inside my intestines. I slipped into so many papery, backless gowns. In the end, they all had one thing to say: you’re fine. There’s nothing wrong with you.
Nothing wrong with me. The words that had given me comfort in the beginning were now ruining my life. I struggled through classes, graduated, and then went to a world class hospital to have more tests done by better doctors. They smiled at me. They listened. But there was nothing they could do. If this story sounds familiar, I’m sorry. We are the undiagnosed. We stand at a terrible intersection, where we need medical help but don’t know how to get it. One of my fellow sufferers put it this way: “maybe we got sick 10 years too early, maybe in 10 years they’ll figure this out”. But 10 years won’t help us now. So, what can we do? How can we carry on? How can we thrive?
I wish I had perfect advice to give you. I wish I could say “follow these steps and I guarantee you’ll get your diagnosis!” But I can’t. I don’t know how to get a diagnosis, I’m stuck in the same limbo as you. But I can help you to carry on. I can help you thrive. Here is my advice:
Focus on what you can do. I have had to give up so much because of my pain. But I am still able to go to school. It’s difficult, but I make it work. Whether you’re bedridden, healthy, or somewhere in between, we all have things we wish we could do that we can’t. Focusing on those things will only bring you more pain. Instead, focus on the things you can do.
Seek mental health services if you need them. Chronic illness is incredibly hard. The insecurity of not having a diagnosis is incredibly hard. People I know avoided getting help because they were worried it meant their symptoms were psychosomatic. If you feel anxious or depressed about your symptoms, you deserve to get help with that. Don’t let your lack of diagnosis hold you back. Your pain and the hardship it brings to your life are real.
Keep going to doctors. This one is kind of about diagnosis, but it’s also about not giving up. Every doctor has had different experiences with different patients. No doctor has memorized the facts of every disease, so those experiences may help lead you to a diagnosis. I have had different doctors suggest so many different diseases, and although none of my tests came back positive, I must believe that if I keep going to doctors and they keep thinking of new ideas, one day an answer will be found.
On the flip side of this, don’t devote your entire life to finding your diagnosis. You must find a balance between progress towards diagnosis and quality of life. Spend time with family and friends. Watch silly movies on Netflix. Go to places that aren’t a hospital. You may be sick, but you are also alive! With a life! Go out there in live it the best you can. Make googling your symptoms a hobby, not your focus.
Connect with other chronically ill. Every chronically ill person was once undiagnosed. They all have valuable perspectives to give. They are also proof that diagnosis doesn’t equal cure, it’s just the first step. Most importantly, the chronic illness community is amazing and supportive and wonderful. They get what you’re going through and they’re here to talk you through it and help.
You aren’t a bad person if you’ve hoped for cancer. We know you don’t really want cancer, you just want an answer. Desperation does ugly things to the mind. And that doesn’t make you a bad person.
Lastly, don’t give up hope. I know it’s hard. I know it seems impossible at times. But I don’t just mean hope for a diagnosis. Don’t give up hope that you’ll live a full life. Don’t give up hope that you’ll get to follow your dreams. The world is getting more and more accommodating every day. There are ways for us to participate and succeed with our limitations. Don’t give up hope that you will figure out your place in the world and thrive in it. Diagnosis or no diagnosis, remember that you will still have an amazing life.
I hope this helps. Anyone with questions, concerns, or who just wants to talk can send me a message. We will be okay. And not in that fake happy way that doctors say it when we get yet another negative test result. In a real way.
Marta Olmos is a postgraduate student in Scottish History at the University of Glasgow. She grew up in Florida, and she loves old coins, Scotland, Great British Bake Off, and her cat. She has been suffering from chronic chest and abdominal pain for almost two years. You can find her on Instagram at @sono_mertaand on twitter at @medicalmystery2.