Dealing With Uncertainty in a Diagnosis

“Uncertainty makes us feel vulnerable, so we try to escape it any way we can. Sometimes we even settle for misinformation or bad news over not knowing.”-Brene Brown

Recently, my patients had brought up the concept of whether it was more difficult to be diagnosed with a mental illness/substance abuse issue or to be searching for a diagnosis related to one’s current symptoms. Through two hours of processing, the group had decided that there was a much larger list of benefits that came with finally having a diagnosis than to not knowing what was “wrong with them.” Patients discussed the relief that came with someone finally telling them, “You have this” after years of believing they just weren’t “normal.” They explained that this was so much validation since they often felt like they were crazy. It provided comfort to family and loved ones since they had a name to the illness. They expressed how they felt they had more confidence in tackling and managing the illness now. What really struck me the most though, was their discovery of how much they had pushed away a diagnosis. They spent days, months, and even years doing everything to avoid putting a name to it at times in fear of how “scary” it could be. Now they explained that while the initial shock created all sorts of internal chaos, it also provided them with freedom to start accepting reality.

I walked away from this psychotherapy group feeling relieved and grateful. It was moments like this in my job that I felt blessed because at the end of the day, they taught me so much about my own internal struggle.

Would I rather know what was wrong with me or remain uncertain?

I have been tested for more possible disease and illnesses than I could even remember or recall. Some were tests that the doctors believed were possible, others were just precautionary to make sure we weren’t missing something obvious. With every test, I became an anxious mess awaiting test results. Many times, I would spend hours researching that disease to see if my symptoms “matched”. The problem with this was that each time I had convinced myself that maybe the doctor had it right. Maybe this time, I was going to find the answer. This also meant that each time I was told I had X, I began to prepare myself for the consequences. I had started the process of accepting the disease before it even started so that I could hopefully handle the initial shock in a “better” way than I anticipated I would otherwise. The bigger problem was that with each time the test came back negative,  I was distraught about landing back into the field of uncertainty.

So far there have been three major conditions that the doctors actually considered to be possible. The first was Hereditary Angioedema (HAE). My allergist had done a full work up for autoimmune diseases after my body wouldn’t “calm down” and stop overproducing histamine-like symptoms. I remember receiving the phone call stating that my “levels were high” and that I needed to see this specialist far away to better assess. No other information was given. I remember listening to this voicemail on my way to work and immediately melting once I walked in. This was the first time anyone had told me that something was actually wrong beyond my recent food allergy diagnosis and because of that, I felt extremely sensitive and fragile to it all. Upon my first doctor’s visit, the autoimmune doctor asked several questions. By the end of the session, she explained that she believed I had HAE. She described it as episodes of swelling. Most people have this externally, such as on their legs or arms, but mine was the life threatening kind. The kind where your inside stomach swells or your throat swells and your breathing ceases. This explained why I felt like my throat was closing or why I had severe stomach pain that couldn’t be explained otherwise. She spoke about how throat swells were the most dangerous because you would often need a tracheotomy if you waited too long to receive help. Before I could even process this, she immediately cut to the chase of managing the illness. I was told that she was going to give me two weeks to decide on a course of treatment.  I had two options: Give myself intravenous injections every single day, with additional shots if an episode occurred, or get a port to allow IV injections to be more accessible.

When someone tells you that you’re going to have to insert a needle into your vein for the rest of your life, your world essentially collapses. I questioned how could one realistically do this? Friends and family told me there was no way the doctors would trust me to do such a thing, but videos and information packets described otherwise. I questioned how could I afford this? Would I have to pay for a nurse? The doctor told me I needed to come up with a treatment team to bring to the next meeting because they would need to take care of me. Take care of me? What? I wouldn’t be able to take care of myself? Would my boyfriend need to move in with me? How would I go out in public with a whole bunch of needles? The questions were endless. I spent over two weeks paralyzed by trying to figure out how to make such a decision.

Along the way though, both myself and loved ones started pointing out things that made sense about the diagnosis. Cold triggered stomach episodes, so my mom said, “That makes sense that you could never tolerate ice cream!” Beer also caused reactions, to which again correlated with some of my history. We started to convince ourselves that this was going to be my reality.

The thing that didn’t add up was the fact that this was a hereditary illness. One of my parents had to be a carrier for me to have this. Each could have the disease without even knowing it at this time. This also extended to everyone in my family who was still alive that I was urged to tell to get tested immediately. It was an unreal pressure and severity that I was not prepared for. The most difficult part was being told that my sister’s unborn baby would be at risk and needed to be tested the moment he was born. How could something so horrible about me translate to so many other people in my life, even those not alive yet? I felt as if I had just tainted everyone’s sense of their own normalcy.

On the day of the appointment where I was going to further discuss treatment options, I felt that I was going to have to start to face this illness. Once it was officially confirmed, I couldn’t hide from it. I was going to have to make decisions that were going to impact the rest of my life. Mom and dad both got tested. Mom and dad both didn’t have it. Two weeks of what felt like hell turned out to be an appointment telling me I did not actually have the disease because my numbers had leveled off. Two weeks earlier I was told that I was 1 out of 50,000 who had the disease. What odds. That day I went back to being “normal” in everyone else’s eyes, but I felt even more like an outlier.

If it wasn’t HAE, what was it? This doctor had referred me to a GI specialist and stated she could no longer help. She had now suspected it was Celiac.  So the cycle began again. I spent hours researching it and coming up with every reason that I could have the disease. Fog/fatigue, weight loss, IBS symptoms, rashes. Check, check, check, check. The list went on and on, but one very strong thing stood out that didn’t make me believe this one. I had a terrible reaction just a couple of weeks prior that appeared to be anaphylactic from food eaten at a nut free and gluten-free bakery. Plus, carbs are my life. Despite this, I still worked towards believing this was possible. People stated that this one wouldn’t be “so bad” because there are so many gluten-free items. When I began reading about what gluten actually is and all of the foods it hides in, I panicked. I imagined adding another layer to my fear of food and inability to feel like I had control over this. I pictured how quickly my safe food list would dwindle and how much harder holidays would be. I didn’t want this one. I wanted another one. Luckily, I didn’t have this one.

If it wasn’t celiac, what was it? Since the summer, both my allergist and my GI doctor believed there was possibility of a neuroendocrine tumor that resulted in something called carcinoid syndrome. Once again, this was something extremely rare. So rare that the initial testing was collection of urine specimen for 24 hours without being able to leave the house. These symptoms aligned with all of my symptoms of anaphylaxis. The doctors now believed that it was possible I didn’t have a true nut allergy, but that those episodes were really episodes of carcinoid crisis. This had made sense to me since the diagnosis of a nut allergy was still so confusing to me. All of the symptoms also aligned, with the one symptom of flushing not being found in any other realistic diseases of those at my age. My urine test came back negative, but my blood test came back positive. At first, my doctor dismissed this and I felt stuck again. Fortunately, this diagnosis was something I had strongly believed in. I spent days and days researching the most up to date information on neuroendocrine tumors. Where could they be located? How would the cancer present itself depending on location? How small could they be that caused them to be undetectable? I fought my way into convincing the doctor that we would be naive to just brush off a positive blood test for something that indicated I had a tumor. How could I possibly live with myself if I found out I had this years from now and didn’t do anything about it? How could we dismiss this information when this was the first time two doctors had even thought of such a rare diagnosis at the same time? He agreed with me and stated that I needed to go to someone who specialized in carcinoid tumors and that my journey with him now ended because he couldn’t do anything else. This is where my journey with Penn began.

There was a large lag time between my GI specialist and trying to get into Penn Medicine. I had to connect with a Cancer Navigator. I had to send over 50+ pages of lab results justifying why I needed this level of care. I had to prove that I was sick enough in so many ways to deserve an hour with this doctor. It was unlike anything I had ever experienced. I had to learn how to fight and advocate for my needs when no one else was. Through this though, I had become so passionate in the idea that I could have this terrible cancer because I had to. I had to believe it so that I could make others believe it and help me treat it. In the months leading up to an appointment, I had joined a Facebook group to learn more information on this one because I didn’t know what else to do. I heard of people having to get parts of their GI track removed. I heard of people who had all of the testing done and not being able to find the tumor, but still clearly having the symptoms. I shared and asked about certain weird symptoms that I had. Others replied stating they had the exact same thing and were too nervous to share. I felt like I had started to find my place. I felt like I belonged, that others got these things about me that felt so difficult to share with everyone else. I felt validated and heard in so many ways that I hadn’t experienced quite yet through any doctor. People diagnosed with this type of cancer identified themselves as Zebras. In my mind, I had started to become a Zebra. It felt like it was becoming part of my identity, and as much as I didn’t want to have cancer, I felt semi-attached to this concept or potential diagnosis.

Upon my initial visit with my doctor at Penn, he began the evaluation by telling me that he thought I’d be very worried, but that I had nothing to worry about. As we progressed through an hour-long session, he began to become confused about how several of my symptoms contradicted with one another. He talked aloud about possible diagnoses, but how X didn’t match with Y so it wasn’t possible. He was lost and was trying not to show this. At the end, he explained that chance of having a carcinoid tumor were rare, but that we were going to have to bark up that tree because of my blood test. On the way out of the room, he turned to the oncologist to say, “This is a very tricky case.”

After the testing as described in my previous post, I waited for what felt like years to receive the news. The doctor opened the conversation with my favorite question of, “Do you want the good news or the bad news?” Good news was my scan came up clear. Bad news was, he was back at ground zero with no inkling or idea as to what I had.

I lost it. My world shut down. I shut down. I didn’t want to talk to anyone. I didn’t want to tell anyone. I knew everyone else would be thrilled about the great news. I knew everyone would be so relieved that I did not have this very rare form of cancer. I knew I would feel extremely invalidated when they would share these (appropriate) feelings with me because while I understood them logically, I had no connection to them emotionally. How could I not have this one thing that everyone that I had? This was the last thing anyone had any insight into. This was the last thing a doctor felt confident in. I wanted to bury myself back under my sheets and not come out again until someone had other information that would make an ounce of sense to me because at that moment, I was lost. I was defeated. I wanted it to be over.

With each time I received great news that I did not have one of these terrible, horrible, unimaginable diseases, my loved ones cheered with joy. With each time I received this great news, I somehow fell further and further down the rabbit hole without the ability or tools to climb out of it. Each time part of me tried not to become attached or hopeful of them finding a diagnosis, but a stronger part of me had become accepting of each disease because it felt like something I had to do. I had to have faith in the idea that each illness could turn out to be my reality because that was the only way of protecting myself.

I have gotten to the point where I would rather be faced with terrible news than to be met with uncertainty. I do not believe that others without a chronic illness could possibly begin to understand the irony of one being disappointed and heartbroken to hear she doesn’t have cancer. The thing is though, others don’t have to wake up in a body every day that feels like it’s at a war against itself without any solution ahead. Each time the doctor says, “You don’t have X”, I hear, “You’re 200,000 miles away from being able to manage your illness”, which then equates to, “You’re going to have to keep suffering until I somehow come up with another rare disease that you could have that I haven’t somehow thought of yet.” No one wants to stump a doctor. No one wants to be the case that’s undiagnosable. No one wants to feel the feelings I feel knowing that this is now my reality time and time again when they tell me the test came back fine. If the tests are fine, then what the hell is going on? This uncertainty weighs and weighs you down.

Just like my patients, the benefits of finding out what’s wrong with me clearly outweigh the difficulties that come with a diagnosis. At the end of the day, I want someone to tell me I’m not crazy. I want a label to be able to explain to doctors, to loved ones, to co-workers, what it is that I have instead of trying to explain the ongoing list of symptoms. I crave having a diagnosis to connect with others emotionally who are going through a similar experience to decrease these awful feelings of isolation. I want someone to take a look at me and say, “I can handle this. I know what to do.” I yearn to escape this daily anxiety and apprehension of, “What’s going to happen to me? What do I do if I start to get symptoms that are unbearable? How can someone help me if I don’t even know what’s wrong?”

Maybe I’ve invested too much time believing in the possibility of any of these diagnoses. Maybe I really would have rather found out terribly earth shattering news than no news because to someone living with an unknown chronic illness for almost a year, no news is bad news.

When I look back on that psychotherapy group,  the most important thing for both my patients and myself though is hope. When all is said and done, I don’t just want a diagnosis for the sake of a diagnosis. I want to know what’s so wrong with me so that I can start believing in the idea that things can change, that there is another way of life that I can have..that it won’t be this way forever because no one deserves to deal with such uncertainty.

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2 thoughts on “Dealing With Uncertainty in a Diagnosis

  1. Hi Dana, I took interest in your blog because I am going through something similar. Have you been tested for mastocytosis because what you describe sounds similar. Please read about mastocytosis. You will have a positive CgA test which is also common with carcinoid. I was just tested for it via bone marrow biopsy and I was negative but for me I am certain I have carcinoid. I had carcinoid removed from my ovary in 2007 but because all my blood work and scans are negative my carcinoid specialist had me tested for mastocytosis. I believe I have a small NET releasing hormones enough to make me sick but too small for traditional scans. Right now I m try ing to get into Gallium 68 NIH study- scan. I ve lost 20 pounds in the last year, have terrible GI symptoms and flush all the time, particularly on exertion. I hope get answers soon. Keep your stress level low as that will help control symptoms – difficult when facing the unknown.

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    1. Hi Julie, thank you for responding. I hope that my words can provide some comfort for you. I was given a blood test for mastocytosis at one point and it came back negative. More and more people who think they have carcinoid appear to also match the symptoms of mastocytosis though so it makes me question whether I’ve explored that route enough. I’m terribly sorry to hear that your journey has been so difficult. It feels so invalidating when they cannot find the NET, yet all the symptoms are still occurring. I commend you for continuing to fight!

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