In late March, I went out for a walk on the nature trail by my house. As I crossed one of the several bridges along the route, I noticed something unusual—a flash of silver as a fish (specifically, a bunker) surfaced, gasping, and then rolled back over into the water.
This is not normal fish behavior. Generally, these guys stay down deeper—after all, there are predators around.
I looked closer and saw one or two other fish doing the same thing.
The next day, my mother accompanied me on my walk and we stood at the bridge for a longer period.
Not only did I see a fish or two surface, gasping, but I also saw a dead fish float by.
I tried to write it off in my mind.
But I counted five silvery bodies floating by that day. We weren’t there all that long.
On my next walk, it was unmistakable.
There was a fish die-off happening. It wasn’t just one or two fish. Everywhere I looked, more fish were struggling, surfacing, rolling over, and going back down.
More bodies were floating by.
Fish were washed up on the shore, stuck in the reeds, or drifting with the tide.
I called the EPA and wasn’t told anything useful—but I found an article discussing it.
Apparently, a specific species of bacteria are infecting the menhaden and causing catastrophic organ failure.
My little waterways are now full of decaying fish corpses. The smell is intense, and the silver of their scales has faded to a dull gray.
It’s been a month now of all this, and it’s been emotionally exhausting, seeing the bodies every time I try to enjoy nature, and smelling the rot whenever I go out.
While I don’t always smell it at my home, sometimes, when the wind blows a certain way, I get the sickly sweet smell of their bodies rotting away.
Now, what does all this have to do with chronic illness? A lot, actually.
Ignoring early symptoms
For the most part, people very simply don’t want something to be wrong. This is true whether it’s with our bodies, minds, or environment.
If we can pretend things are okay, we do.
Remember, the first few times I saw the menhaden struggling, I didn’t do anything—I just hoped that it was a one-off occurrence with a simple explanation.
It wasn’t until there were lots of them obviously dead or struggling that I reported it.
When my Functional Neurological Disorder (FND) symptoms first began, I did the same thing: ignore it. My symptoms started as exaggerated shivers that mostly occurred while I was cuddling with my then-boyfriend.
I didn’t make the connection at the time—but when he’d hold me closer, I’d shake harder. Neither of us considered it something to bring to a doctor’s attention.
Looking back, I recognize that those symptoms were my body expressing my subconscious stress and fear because of the volatility of the relationship.
During that time, we were fighting regularly, and I never really knew where I stood with him.
After we broke up, my symptoms became visible to more people, and my friends became concerned for my health and safety.
It was only after I had multiple full-body myoclonic episodes that I reluctantly agreed to see a neurologist to try to determine what was going on.
It being dismissed as “stress” didn’t particularly help, and reinforced my instinct to ignore it and hope it goes away.
I suspect I’m not alone in this.
For many people, acknowledging that something’s wrong isn’t easy—it takes courage and self-awareness and a belief that you’ll be listened to.
Or it needs to be so very bad that it’s literally impossible to ignore.
For too many of us, that’s just what we do: ignore the problem until we hit a crisis and we just can’t keep going.
I know I did.
Reluctantly acknowledging that something’s wrong
When I realized that there were too many dead and dying fish in the water for it to be cooincidence, I did a little digging and found the number for the EPA’s Fish and Wildlife department and their number for reporting wildlife issues.
The dying fish were a symptom of a problem in the ecosystem—in this case, the overabundance of a particular bacteria.
Why did this happen? Most likely, a combination of underlying issues (like excess nitrogen and phosphorus from sewage treatment plants, nutrient runoff, and temperature variations) created the right environment for this bacteria to reproduce like crazy.
Die-offs also can occur for other reasons, like algal blooms or a severe decrease in dissolved oxygen in the water. The die-off is the symptom, and we need to know the cause in order to know what needs to happen next.
With the fish die-off, once I knew that this wasn’t a coincidence, I felt that I had to do something, which in that case was to call the EPA (getting an expert opinion).
An additional challenge faced by most disempowered/minority identities (women, people of color, disabled folks, LGBT, etc.) is the risk of not being believed—or of having internalized this possibility so strongly that we convince ourselves not to bother investigating our symptoms.
Bias is a very real problem in the medical community, and is another piece of this puzzle—if bringing up these vague symptoms is likely to be dismissed out of hand, why bother?
Many conditions have similar or overlapping early symptoms, which makes them harder to diagnose and treat.
For example, many conditions are accompanied by fatigue or pain or a runny nose. With FND, the symptoms vary from person to person, but the patterns remain similar.
For FND, symptoms are sometimes gradual (especially in cases like mine where the stress is more chronic than abrupt), but usually include one or two neurological symptoms, without the standard causes.
FND symptoms also are often inconsistent and often are in some way associated with stress or trauma.
For me, a long and familial history of depression and anxiety set the stage, followed by the triggering sequence of a romantic relationship that turned toxic.
The ongoing stress and uncertainty involved in that relationship triggered my FND symptoms, which started occurring publicly after the breakup.
I basically only felt safe if I didn’t expect to see him and I knew that he didn’t know where I was.
The constant fear and uncertainty left me in a near-constant state of anxiety and having movement symptoms every once in a while due to that ongoing stress.
They seemed to be occuring at random because I was almost constantly afraid and on alert—so when I did feel safe, that tiny bit of relaxation would lead to my symptoms coming out.
For others with FND, a specific traumatic event might be their cause—like a car accident or a broken leg.
The FND symptoms would occur during the healing process and often would prevent them from doing the thing that their subconscious associated with their injury.
As an example, I read the story of a woman whose son developed FND after an injury that occurred while playing soccer.
While his leg healed, he found himself unable to walk or run—which prevented him from returning to sports.
With many other conditions, people just adjust themselves to their symptoms—avoid certain activities or take painkillers daily, until eventually something gives and they recognize how bad it’s really gotten.
Generally, once our health conditions become so obvious that others point it out, we reluctantly acknowledge that something isn’t right and get a medical opinion.
The problem is that that delay can (and often does) make things worse.
The cost of waiting
The fish die-off was something completely out of my control. All that I could do was observe the symptoms, recognize the wrongness, share it with the authorities, and observe the results.
With our own health, we can be more proactive, as there is more that we can control.
Waiting until things get bad, while a very human thing to do, often makes things worse than they otherwise would be.
With my FND symptoms, I had to see multiple neurologists before I got to the one who actually understood my condition.
It was a matter of persistance and of being certain enough of the reality of my situation to keep pushing.
With many other conditions, though, these delays can cause serious harm.
Cancer, for example, is much easier to treat early on rather than later, especially more aggressive forms.
We have screenings available now for many forms of cancer, which can help with prevention or early treatment.
Pap smears, for example, help test for many of the causes of cervical cancer. Because of my regular wellness visits, my gynecologist noticed precancerous cells and was able to remove them during a biopsy.
Al and I are currently dealing with the fact that a member of his extended family was just diagnosed with stage-four colon cancer.
If he had had regular colonoscopies, as recommended, it would have been caught much earlier and been correspondingly easier to treat.
Every condition has differing costs associated with delays in testing or treatment.
For some, like my FND, the probably two-month delay between when my symptoms became obvious and when my friends convinced me to see a neurologist likely didn’t make a difference.
However, it is a condition that is very responsive to habits and mindsets, and so the longer I delayed getting diagnosed, the harder it would be to break those habits.
For other conditions, the delay may make a significant difference in how easy or difficult it is to diagnose or treat your condition.
The problem is, there’s no way to know whether the delay is significant or not until after you’re diagnosed, which can be a long process.
Knowing when to see the doctor is a very useful skill to develop—as is knowing what you need to tell them!
Living with the consequences
Whatever happens, you need to live with the impacts that your delay has caused.
While the fish die-off is mostly a nuisance issue (menhaden die-offs are a relatively regular occurrence), it’s still been upsetting for me and others to see (and smell) the impacts of their deaths.
I worry for the sake of the other species in the area and hope that the current assessment (that the menhaden are and remain the only fish impacted—and that their species will not be impacted in the long term) remains the case, and that there is no long-term damage to any species in the area.
Given how many of these fish there are and their relative importance in the food chain, I’m struggling to believe what I’m being told.
As a symptom of a larger issue (global climate change, water pollution, variable water temperature, nutrient runoff from sewage treatment plants), it will be good to be certain of a more precise cause and to be able to prevent or manage reoccurrences if possible (bunker die-offs do happen close to annually, but the severity and timing can vary hugely).
With your own condition, it’s helpful to identify any health issues you have as early as possible without wasting too much of your and others’ energy on “standard variances”—by which I mean those random odd things that everybody has happen within their bodies on occasion.
Many people have some point where they may hear a high-pitched tone in their ear, or may have a headache—and we all have some weak point or other, or an oddity that is normal for us.
The key is to recognize when those one-off things shift into becoming a habit or an ordinary event—or when something is more than just the random oddities that all our bodies have.
For me, full-bodied shivers when warm wasn’t enough—it took friends worrying about these episodic full-bodied mayoclonic jerks before I got help.
Each person has their own point at which they seek help, or when they recognize something isn’t right.
Honestly, it’s a skill that’s honed through practice. But you also can develop and improve it by being and remaining self-aware and by reducing your objections to a reasonable level.
The other piece to bear in mind is that while you are the one paying the heaviest toll for ignoring your early symptoms, often you are not the only one impact by these decisions.
With the menhaden die-off, all the people who use the trail had to live with the stench of decaying fish for much of this past month.
If you develop new symptoms, not only do you need to live with the impacts they have on your system, but also your loved ones need to live with the impacts your condition or diagnosis has on you and your relationships.
Conclusion: listen to your body, it can tell you all kinds of useful things
I started this post talking about dead fish and extended the metaphor to the symptoms you experienced when your condition first started.
Everybody’s body has quirks—our job is to learn to distinguish between “normal” oddities and early symptoms of a new condition or problem.
Our instinct will tend to be to dismiss or ignore those early signs and suspicions, but doing so can have far-reaching consequences.
You won’t know until after you have a full diagnosis and truly understand the nature of your condition—which is a process in and of itself.
Whatever the consequences may be, you will need to live with them.
You deserve to be happy and to truly understand what is happening in your own body—so do what you can to remain vigilant and acknowledge changes as they occur so that you can maintain a good quality of life and minimize your stresses every day!
I am quite possibly, the worst at this. I have doctor anxiety so I will put things off for years until my spouse gets so fed up he pressures me to go.
So many of us have medical trauma! I get it(and wrote a post on it!). I’m glad your spouse is willing and able to nudge you towards more/better care when you need it -and I feel for you. It isn’t easy to go back into a triggering situation after being traumatized. Unfortunately, we do need to!!
Guilty as charged! It’s so easy to write off the subtle changes… until they snowball and you realize that you’ve adjusted your lifestyle to accommodate your declining health. This is a terrific post – thanks for addressing this topic!
Thank you for reading! I’m so glad you found it useful – I’m with you 100% I have gotten better about getting help sooner, but it definitely was challenging initially. Those aha moments around just how bad things are are both illuminating and painful.
A very clever and interesting way to illustrate your point. I tend to put new problems off unless I tell my husband. If he knows, he hounds me to get it attended to quickly. I see that Shelley has the same type of husband! LOL. At least they’re good with it!
Thank you! So glad your husband is supporting you this way! Al is much more laid-back than I am, so I tend to be the one who hounds a partner to get treatment!
Yep, I waited till the “fish stink” was really bad. I couldn’t function. That’s the reason I finally went in to figure out what was going on. Now, with FMS, it’s often hard to know when something is a “new” thing or just something that will come and go. I’m much more proactive, but have for a lifetime of ignoring the issues (not even recognizing I had them).
This fish die-off will be a lasting visual for what it means to wait until it’s too late.
*hugs* yeah, it often takes a really severe stench to get started. I totally feel you on the is this ‘new’ or ‘temporary’. With my FND symptoms, I know that I can have symptom shifts and that I can develop new conditions, so generally, if something lasts more than a few days, I mentally file it as ‘need to get it checked out’ and try to reach out to my doctors shortly after. It isn’t easy to break those life-long habits, but it’s so important to protect your health!
So glad I could provide that helpful visual – that was my goal!
I feel like you are narrating my life story here, Alison. The GP basically dismissed my pain as muscular cramps when in fact, there were multiple DVTs in my lungs that had clotted in my lungs. I waited a few days before going to the A&E when I couldn’t breathe anymore. It was a close fight with death that night, and did permanent damage. It really is my biggest advice whenever anyone asks me what I’ve learned from pain. Thank you for writing about this important topic.
I think that’s true for so many of us – as you can tell, it seems like this really resonated with folks! Bias from doctors is such a huge issue(suspect I need to write a post on it!). I’m so sorry that it was so life-threatening in your case, and so grateful that you survived!