Introduction

My name is E. I’m a 35 year old woman who started suffering from an ever increasing number of physical problems about 6 years ago. Some of my health problems now have names and courses of action that go with them, and some of them still do not.

The process of waiting for my diagnoses while I got sicker and sicker was one of the loneliest experiences I’ve ever had. I want to share some of that experience here and to hopefully create a forum for others who are going through similar experiences to connect and share with one another.

I am not a medical professional, so this site is not meant to give medical advice. It’s meant as a space for people with serious and chronic illnesses who are waiting or who have experience waiting for a diagnosis to share our stories, our fears, our hopes and our joys with each other in order to make this process feel just a little bit less lonely.

Welcome to Our Waiting Room!

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Dating, Emotional Availability, and the Wait

Being sick is exhausting, not just physically but emotionally as well. Add to that mixture the stress of waiting to find out what is going on with your body and let’s just say it pretty drastically shrinks your capacity for… well, everything. At least, it did mine.

When I first got sick, I was seeing someone. A little while after we stopped seeing each other, I met someone else, who eventually broke things off in large part because they could not handle my illness- which is probably mostly fair and for the best, but will never not feel like an extra crappy reason to be dumped. Then I didn’t date for a little while, figuring it would be better to focus on my illness and finding out what was wrong and getting better and stuff.

Eventually, though, that didn’t feel better at all. It just started to feel like my illness was holding me hostage. My entire life was on hold, and I hated it! So I ventured back into dating, and I noticed this pattern that I had developed of being attracted to people who could be categorized as “emotionally unavailable” for one reason or another. Some were active alcoholics of the emotionally unreliable sort. Some were recently out of long term relationships. Some were just inexplicably aloof. The running theme, though, was that these people were not as openly jazzed about me as I felt about them, and I couldn’t understand why I kept winding up in the same predicament over and over again. In hindsight, though, it makes sense.

I was attracted to emotionally unavailable people because my own emotional capacity was so very limited that they felt less overwhelming to me. Truth be told, they mostly still do. The idea of having to show up for someone else at the level expected of a person who isn’t sick terrifies me. The idea of being needed, or of letting myself lean on someone who might not turn out to be up for everything that encompasses dating me, or of negotiating a whole new set of boundaries and likes and dislikes with somebody who really, really likes me is enough to induce a panic attack.

On the flipside, what is hardest about those emotionally unavailable folks is that dating them ends up feeling way too similar to waiting for a diagnosis.

I have a pretty clear idea of what I need out of a romantic relationship. It’s not unreasonable. I need monogamy, I need honestly, I need attention, I need space. I need to be able to fight well with the person, I need mutual kindness and I need sex that’s worth sticking around for. None of these has to be mind-blowing or amazing. If I happen to meet someone who can give me these things and who I want to return them for, if we only do one or two of them amazingly or mind-blowingly well, I will feel like a very lucky gal. I’m blessed (cursed?) with the gift of assertiveness, so I’m able to be pretty up front about all of this with folks I start to see.

What happens with the emotionally unavailable crowd, though, is that this starts to feel like submitting a request to see a specialist. First, I have to wait for the initial appointment. Does my condition qualify as something that falls within their purview? Do they find me attractive, interesting and pleasant enough to want to see and keep seeing? Yes? Okay, first hurdle overcome. Next come the lab tests, which presumably measure my awesomeness against either other people’s awesomeness or against Other Fun Stuff (we’ll call that OFS). By the time I’m calling to ask for the results (is this a go? Do you want to do this relationship thing?), “I don’t know” is not really an acceptable answer, because I have been hearing “I don’t know” for YEARS now, and I literally cannot stand having one more area of my life where I don’t have some clearly defined next course of action. If my awesomeness doesn’t clearly, CLEARLY measure up against other people’s awesomeness or OFS, I need to be moving along. Not only do I not have the time or energy for someone who feels lukewarm about me, but “meh” basically feels like yet another “beats me!” Wrap that in a package that gets its feelings hurt about not being able to keep me around in their back pocket or on a shelf for a rainy day, and I might also have my sanity questioned in a way that feels eerily similar to being at the doctor’s office when your doctor doesn’t know what is wrong with you.

So… emotionally available folks may be overwhelming, but emotionally unavailable folks don’t work out so well either.

For the past while, even though I have a diagnosis now, I’ve been on a hiatus from dating. It feels good. I have begun to venture into new friendships and light crushes here and there. Those feel like the right speed for my body and my mind now. I’m still not letting my illness hold me hostage- I’m just pacing myself, and along the way I’m on the lookout for new folks to invite into my life who have some emotional availability, but even more importantly, emotional awareness. Folks who, for example, are able to not take it personally when I need to reschedule or cancel plans.

Maybe eventually I’ll wind up with someone I like who likes me back, who doesn’t overwhelm me AND who can tell the difference between “I’m naked because you’re here” and “I’m naked because my clothing feels like it is crushing my bones, please don’t touch me.” THAT, my friends, would be pretty dreamy. If it happens, I promise I’ll write more about it.

What It Was

All told, I was sick without explanation for four and a half years before I was diagnosed with a combination of chronic Epstein Barr Virus and late stage Lyme Disease. Although I’d been through years of diagnostic imaging, each of these diagnoses only require blood tests (though my fist Lyme test was equivocal, so I had to follow it up with a second, expensive Western Blot test). The other thing they required, though, was excluding enough other diagnoses for my insurance to pay for those tests and a final referral to the specialist who performed them.

Treatment for chronic EBV is pretty straightforward. Treatment for late stage Lyme Disease is not, and has involved a lot of physical pain. In short, I had to get worse before I started to get better. The pain was nothing, though, compared to the relief I felt at having names for what was so terribly wrong with me for such a long time.

So I knew what it was, but it was so much more than just a diagnosis.

It was the end of “maybe it’s all in my head.”

It was release from limbo and a path forward.

It was an admittance card to sick and disabled community I desperately needed and couldn’t fully access without a diagnosis.

Folks still waiting for a diagnosis already know these things, and I honestly wish each and every one of you the answers you so badly need.

 

What It Wasn’t

I was one of those cases that was vague and multisystemic enough to require a lot of “ruling out” before I got going towards a diagnosis. Eventually I would, in fact, end up with multiple diagnoses, which would explain a lot about why I was so difficult to diagnose based on what my symptoms were telling me and my doctors.

There was a lot of stabilization of symptoms that had to happen before even the fuzziest of pictures of my illness could be seen. The surgeries were part of that. Whatever it was, my illness wasn’t improving as I recovered from surgery, which meant that the surgeries themselves had not fixed the bigger problem.

The next part of that was stabilizing my iron and vitamin D deficiencies, which were both contributing to pain and fatigue. My vitamin D, it turned out, was so low that I was having problems with my parathyroid, which I saw an endocrinologist about.

When getting those deficiencies dealt with didn’t resolve my problems (though I certainly did feel better than before), I was sent for an MRI to check for Multiple Sclerosis. My MRI came back negative, so I was referred to a rheumatologist, where I was stuck for about a year with standing lab orders trying to catch antibodies floating around in my blood on my worst days that might indicate something like Lupus or an Unspecified Connective Tissue Disease. Nothing showed up.

It was the rheumatologist who suggested that, with my symptom cluster, it sounded like I might have AIDS. She asked if I’d been tested for HIV (I had) and whether I’d agree to be tested again (PLEASE test me again).

Negative.

The only diagnosis I left the rheumatologist with was Benign Joint Hypermobility Syndrome, which was the explanation I was given for my joint pain and stiffness, but did not account for many of my other symptoms.

I  continued to decline, having more and more days when I couldn’t get out of bed. When I could get out of bed, I had headaches and dizziness that made riding the bus impossible even with motion sickness medicine. I had periods of facial flushing that were alarming to my friends and family, but were not accompanied by a fever. Glands in my throat and behind my ears swelled and contracted. I was regularly nauseated and it hurt my eyes to look at my computer or read a book.

I was told that I may never know what was wrong with me, and that I should focus on symptom management to the best of my ability and work on adjusting to my limitations. It was suggested more than once that my symptoms were simply a physical manifestation of my anxiety. That started to make more and more sense after a while- I certainly was anxious to know what was the matter. Being ill and not knowing with what or anything about how to care for myself was pretty terrifying. It was also depressing not being able to do so many of the things I enjoyed or was used to participating in. As I struggled to keep up with my life, I began to feel like I was watching it drift past me, leaving me behind.

Years of illness and doctors and tests had gone by and all I knew was what I didn’t have. I started to work hard at accepting that I really might never know, and to find a way to live with the unpredictability of my body, all while constantly waiting for the other shoe to drop.

In The Beginning

My story began in the summer of 2011. I was 30 years old, had recently returned to college after a long hiatus, and was about to spend my third consecutive summer directing a leadership program for teens in a beautiful children’s camp nestled between two mountains in the Columbia River Gorge. I left my job early, before the children had even arrived, to attend to a family emergency.

When I left the Gorge that June, I felt physically fine. I’d struggled for years off and on with depression and anxiety, but had always been relatively physically healthy. My body was strong enough to climb mountains, and I had abundant energy. There were no warning signs, not even a sore throat- nothing that could have prepared me for what I would go through over the next few years.

It took a a number of weeks to notice my symptoms (or, rather, that my symptoms weren’t going away). When I returned home, I assumed that I had just picked up a bad cold or flu during my pre-camp training- not an uncommon occurrence in a residential setting with a bunch of new people. I took care of myself like I normally would with an illness of that nature: I rested, I stayed hydrated, I took it easy. After a few days, my illness would start to subside, but just as I thought I was over the worst part, it would return with a vengeance: headaches, a low-grade fever, body aches, nausea and vomiting. Eventually, it became clear that something was seriously wrong and I needed to see a doctor, so off to Urgent Care I went!

The doctor at Urgent Care examined me briefly, concluded that I most likely had a UTI, and sent me home with a prescription for antibiotics and instructions to return if my symptoms worsened. I was in the emergency room 48 hours later, where I was admitted for surgery to remove some endometrial tissue that was trying to murder my left ovary.

Emergency surgery is alarming, there are no two ways about that. The night before I was cut open, nurses kept waking me up and asking me questions like “do you already have children?” and looking at me with pity when I answered that I did not. My pre-surgical imaging revealed that I had a kidney possibly missing (WHAT???) and then not missing, just in the wrong place (WHEW! But WHAT??? Did you know kidneys could do that? I didn’t!). By the time I was ready to drift into anesthetized sleep for my surgery, I was thoroughly freaked out, but relieved that I knew what the problem was and I had a clear plan of action to solve it.

Unfortunately for me, that was not at all what happened. I healed from surgery, and don’t get me wrong- I did feel tons better than I did when I walked into the emergency room. It was my first major surgery, so as I healed, I assumed that everything was progressing normally. I continued to be plagued by pain, body aches and fatigue, but I figured that was just my body healing, and for the first 6 months, that was the feedback I got from my doctor as well… but as 6 months turned into 8, and then ten, and then a year, it became evident that my recovery was not normal. In an attempt to avoid more surgery and at the behest of a well-intentioned friend, I spent a third of my financial aid refund on nutritional counseling and supplements that were supposed to help even out any hormonal imbalances I might still be experiencing. My fatigue continued to get worse. I began experiencing severe abdominal pain again, and the nausea returned. I dropped my hours at school and started again with the doctor visits and testing.

Two years after my original surgery, I had a second, exploratory surgery that cleaned up adhesions that formed after the first surgery and some other minor problems that my doctor insisted should not be causing me so much distress, but she would take care of them just in case they were. That was my first experience with the “let’s throw everything at the wall and see what sticks” diagnostic method for mystery symptoms.

Early on as I was healing from my second surgery, it was very clear that things were still not normal. My vague body aches concentrated themselves in my lower joints and my neck. My fatigue only got worse. My school work suffered and so did my personal relationships.

I. Was. Miserable.

I was also increasingly frustrated. What was going on with me? Why was I still so sick and seemingly only getting sicker?

I would not have satisfactory answers to those questions for another two years. That was the beginning of my new life: a life of testing, baffled doctors, frustration, anger, tears, love, support, and all of the other experiences I had and lessons I learned while waiting for a name for what in the world was wrong with me.