Ambiguity

Sometimes we are left without answers. Sometimes we may not find a reason behind why we experience pain or be given an official diagnosis. We may visit the doctor and leave disappointed and misunderstood. New symptoms may come from no clear reason. Months can go by with consistent pain or many moments can linger with discomfort. I always found myself more discouraged leaving an appointment when the doctor said everything looked fine, then when I had a possible diagnosis or reason behind the pain.

When I first started seeing a doctor for a few of my symptoms, unfortunately, I did not receive the help and treatment I had hoped for. Leading up to an appointment, I would rehearse everything I wanted to say. I did not want to risk leaving anything out. A few times, I actually brought in my journal so I could share exactly what was happening with my body in specific details. I would lay my heart out with every weird and uncomfortable symptom, but often all I got in return was a doctor who said they were sorry but did not know what was wrong. I was given basic pain medications and advice to record the foods I ate to see if I could be sensitive to anything else. I was told it could be anxiety or stress but that there was nothing wrong with my body itself. They told me cut out too many things in my diet at once and try too many scenarios at the same time. In the end, I did not know which item was actually the answer to my pain or which medication was the one truly helping.

Time after time when I left the doctor without helpful answers, I chose to believe I must be fine and that my pain was normal. I continued to see the same doctor for a few years because I always hoped the next visit would be different. I hoped they would finally connect the dots if I was persistent enough. I hoped I would eventually be pointed in the right direction. I hoped my pain would be acknowledged and helped. I also continued to see the doctor because I knew my pain was bad and that there was no way it could be nothing.

But for 6 years, I never got an answer. I was offered more shoulder shrugs, confused faces, and apologies for how I felt then advice or treatment plans. It was finally time for me to stop seeking help because I believed this was a dead end and that I must just be making things up since I continued to not have any answers. I began to ignore my symptoms and live thinking this must just be how my body was created to be. Always in pain. Always left without answers. Always unsupported. I was tired of missing out on events with friends, the foods I loved, and the joy around the table. I said no more than I said yes, and I missed out on more things than I participated in them. All because the pain was too much and I believed the lie that I did not have anything wrong with me if that’s what the doctors said.

Whenever I am asked how I knew it was celiac disease and what steps I went through to be diagnosed with it, I never have a clear answer. I did not have a lightbulb doctor’s appointment, an immediate diagnosis, or a fast recovery with certain treatment. Yes, I did end up finding an amazing doctor who looked me in the eyes and believed in total healing for my body. Yes,  I did end up with a diagnosis. And yes, I am in full recovery. But, it took 6 years. I would love to skip those long years and come up with a clear and easy way to explain my journey towards diagnosis, but I just keep coming back to the 6 years of uncertainty and ambiguity prior to the test that left me positive. The most important part of my journey was actually the years lived in ambiguity.

In a few of my previous posts, specially the ones titled “sharing my story,” I dig in a bit more about the specific testings I had done and when I decided it was time to schedule a procedure and revisit the doctor. I explain some of my specific symptoms and official results. I also share more of what I do when I currently still experience moments of sickness in my post, Getting Sick. But for now, I want to briefly share a few things from the many years I lived without an answer or diagnosis. Obviously, I wish I would have had an answer sooner, but there were so many things I learned as I embraced the ambiguity and fought for moments to trust, meals to try, conversations to be had, and grace to extend. When I embraced the ambiguity, I actually found more freedom and experienced more grace and joy even without a positive test result! I took hope in the assurance my pain was not forever and that there’s still many ways to press into pain with trust and beauty that it is not who I am but just a part of me. I refused to be passive and let food be robbed from me. I knew the freedom from pain others were experiencing and I fought for it myself. I knew I had the opportunity for freedom, even without a test result, and took on ambiguity as a challenge towards befriending food and the health of my body.

When a doctor says everything looks fine:

Trust your body. You know the pain you are having and you know your limits. Yes, listen to what the doctor says, but also believe your gut (in the literal sense). Maybe this means you need to find another doctor. Maybe this means you need to switch to functional medicine. Maybe this means you need to take the medication they are prescribing. Maybe this means you need to allow yourself to try a few options and paths that may bring healing even if it does not make sense from the start. For many years, I refused to go to the doctor when I had pain because I knew I wasn’t going to get an answer. I knew the doctor was going to tell me everything looked fine and I didn’t want to waste my time or energy going. But I risked worsening my health when I was not brave enough to seek out a doctor or find a new one. Don’t quit on medicine and try out options until you find a doctor who sees you and can’t wait to help you. Pain is not normal and everything is not always fine. So push past passivity and trust that health will come. Use this gift of medicine and bring others in to help you.

What to eat when during sickness:

The easiest thing to do is just stop eating or assume that all foods are just going to hurt and irritate our stomachs. It makes sense to believe that every time we eat, food makes it worse. If we just cut out food entirely or restrict it to the extreme, we should feel better, right? No! That is a big lie. We will continue to need food when we are sick because food heals us. I know it’s hard to want to eat when we don’t feel well but we need to continue to fuel our body so we can have the energy to heal it. The best thing to do is come prepared with items we already know we love, so when we get sick, we don’t have to think and can just open our fridge and pantry to many healthy and enjoyable foods to stimulate faster healing. My favorites to enjoy when I am sick are chicken and veggie soup, grain-free bread with almond butter, crunchy apples, pumpkin muffins, eggs with spinach, spoonfuls of avocado, and lots and lots of tea. Don’t believe the lie that all food hurts and that we are too restricted to eat anything we enjoy. We have so so many yummy options!

What foods are okay to cut out:

One of the worst things you can do is cut out multiple things at the same time. If you don’t know what’s upsetting your stomach, don’t take away all the possible culprits. Instead, take out one item a week and go from there. So, if you take out rice one week and don’t see a difference, add it back in and take out something else like cheese for the next. However, I do believe that when we are feeling sick, simply sticking to clean, whole, and organic foods that are anti-inflammatory can benefit and help us.

What to tell people when you don’t feel well:

You don’t need to explain yourself to everyone and you certainly don’t have to feel like you’re a burden when you gather together with friends over food. When you don’t feel well, you can be as clear or as vague as you want. There’s no rules about that. However, this should not be an easy “out” towards isolation and pent up feelings. It’s important to let friends know what’s going on, but not everyone has to know. Let the core group know the scary moments and long months of pain. Let that group know how you are going to start eating and monitoring your body as you try to recover. And then let the more distant group of people know you haven’t been feeling well and you’re going to try and limit some of the things you are eating. Don’t let this overcome you and demand more from you then it should. Give your pain acknowledgement but not control. Work with your body and not for it.

How to socialize:

When I was first diagnosed, I actually started seeing counseling because my lifestyle changed dramatically. In a culture that loves food and eating together, I was worried about how I was going to still get together with friends and enjoy food again. However, I learned that not every time we hang out with friends has to be over food. We can go for walk, meet for tea, play tennis, go shopping, or hang at a house. And if we want to go out for a meal, we are allowed and able to do that as well! Friendship can be more than food. Hang out with friends for the opportunity to invest and enjoy time together. If you do go out for food, just remember to save a cookie (for a few) at home so you can have a little treat waiting for you so you’re never disappointed by the dessert menu.

When to seek help or testing:

There’s no benefit to waiting out the pain. The sooner you seek help, the better and quicker you may experience healing. As soon as you start to feel sick, see a doctor so they can experience the journey with you before you get too far in the weeds. If not a doctor, seek out a friend. Talk to someone who knows you and wants to help you. Getting our emotions out of our minds dismisses the power it can have over us. If you think it may be celiac disease, head to a local labcorp or doctor’s office to schedule a simple blood test that shows if you have the proper enzymes in your blood to break down gluten. After the test, you will have a better idea of if it is celiac disease and what direction would be good for you to head towards. When mine came back positive, I met with a GI specialist and scheduled a scope. Then I began seeking out functional medicine from a doctor that saw my body as a whole so that my stomach could return back to its best functioning state.

Friends, listen to your body and know that it is meant for healing. We can do this and we can experience the joy and freedom of food and pain-free living. When we do not have clear answers to some of the pain we experience, I know it can be more challenging than a diagnosis. Diagnosis or not, we have the opportunity to try new things, find new rhythms, and seek change. We can seek ways to enjoy our unique journeys towards health and know that we are not alone! We are in this together and the light at the end of the tunnel is near. Embrace the ambiguity and use the unanswered questions as motivation to move forward.