Sep 18, 2013

Symptoms vs. Effects: Acknowledging Psychological and Emotional SYMPTOMS of Lyme disease

Chronic Persaverence Facebook page
I feel there is a major and important difference between a symptom and an effect, particularly where emotional 'responses' to illness, or to the world at large during illness, are concerned.

If emotional symptoms fail to be recognized as symptoms (physical and or chemical in nature and caused directly by the illness, rather than occuring indirectly as an effect or outcome), then they serve as one more overwhelming stigma for patients who may be seen as lacking coping skills or responding badly to their circumstances.  Or seen as worn down by the illness (which can lead to inadequate or ineffective intervention for the symptom).

During lyme, coping skills are often completely irrelevant because they are simply not accessible.  There is no logical recipe for a good outlook during the worst acute symptoms of lyme, or while suffering from lyme (especially without treatment).  We aren't lacking a good logical perspective; we are suffering from a disease with many symptoms that defy description, especially while experiencing them, that make us look emotional or unbalanced (and they are not a function of logical outlook, though they may alter it drastically).

I can't describe how these symptoms occur or show them on a chart.  But they are real.  And even if we forget this ourselves, it becomes ridiculously clear when treatment starts to improve these types of symptoms.

It suddenly becomes easier to see where it was not physically possible to look calm and balanced (which we knew at the time but maybe couldn't see clearly) and somewhat easier to at least try to describe to people why it suddenly seems that we are coping better.  It's because the physical/chemical ability to cope is disrupted by lyme disease (as a symptom, separate from this occurring as an effect of the hardships of lyme).

We are also tired and in pain and dealing with a horrible illness, so it would be understandable to assume we cope poorly because we are tired or depleted.  But this is a dramatic over-simplification that is inaccurate and dangerous for patients who are already misunderstood and dangerously hard on themselves.

I strongly believe that this suite of confusing symptoms further inhibits proper treatment and diagnosis, because they make it even harder for patients and doctors to communicate effectively with one another, and because they make it so much less likely for lyme patients to be taken seriously by anyone they encounter and anyone in their lives.  But particularly because it causes us to be told to see a counselor for things we need physical help with first (a local counselor I was sent to saw this very clearly when I was sent to her to get help with illness symptoms that needed attention from my medical doctor).

In my case, these symptoms peaked during legal issues with my federal employer.  These symptoms make buying groceries difficult, but they make dealing with federal attorneys physically dangerous and emotionally debilitating.  In my case, at the worst of it, the cost was losing the ability to function out of bed for more than an hour or two at a time and complete seclusion.

To put a lyme patient in this kind of state in a room with lawyers for over eight hours (I was no longer bed bound at that point, but these were federal attorneys I had to fly to DC to meet with) and make them sign a legally binding agreement at the end of it all is dangerous and inhumane and should be illegal (my other blogs contain various accounts of the 1.5 year federal formal EEO process I survived in order to retain my job and not be forced onto disability).

The hard part for people to fathom is that a meeting or social gathering of any kind can be almost as difficult.  To be excessively sensitive to what others are saying (or might mean) while also being extremely unaware of how we sound and very limited in our ability to control how we sound are not symptoms that pair well in terms of maintaining relationships or protecting a professional reputation.

Sadly, openness with others about this disparity can often make things worse when dealing with people who don't understand.  It can make you seem more unstable and often opens the door for unsympathetic people to voice in with their assessment of the validity of your illness as well as the symptoms themselves.  It sadly serves frequently as an invitation for comments like, "It's that way for everyone," or "it's no different for me" or "life is hard for everyone."

It's very hard to forgive people who respond with further hostility when you offer that kind of openness.  So it becomes a lose-lose with doctors and coworkers in particular (don't tell them and appear unbalanced and hostile, tell them and appear unbalanced, vulnerable, weak, and complain-y).

When I've mentioned dangers so far in reference to these smptoms, I've meant the physical ramifications and regressions that are often brought on by the difficulties these emotional symptoms pose regarding treatment, relationships, and day to day functioning.

Far greater dangers exist, though, and I think a lot more recognition and investigation is needed regarding the most serious emotional and psychological symptoms that arise.  Suicidal behaviors arise in a large number of lyme patients.  I can't speak to which ones or why, or to whether this is the net impact of lyme induced depression (which can be both a symptom of lyme and an effect of this depressing illness) paired with the cumulative impact of the long term emotional symptom of lyme versus this being another symptom in and of itself.

When you look at these day to day and life threatening emotional symptoms and further pair them with cognitive symptoms (problems with word retrieval being one highly relevant example), you are looking at a very serious danger for lyme patients.

I've seen far too many posts about lyme and suicide, with what feels like a sudden explosion of attention (which is good except that it feels like its in response to a sudden rise in suicides, so the attention would be 'best' if it were sudden awareness independent of any increase in the problem).  I've also notice suicide prevention resources pinned to the top of a discussion board in at least one Lyme support group/forum (

Please add resources if you have them to share with any remote relevance to this topic, but especially:
  • Articles on emotional/psychological symptoms
  • Articles on lyme and suicide
  • Blog/social media posts that address any of this (especially encouraging ones)
A starter article on psychological symptoms is, and starter social media post is the following shared photo with comments from my Invisibly Lyme Montana facebook page (which is what generated this blog post):

The number of posts I'm seeing on this topic breaks my heart. I hurt for everyone of us hurting with this. I feel so much better than most lymies do, and I'm doing so well... And even with that being the case there are devastating moments and days. Had one of those moments this morning in a very unfortunate and embarrassing setting. It's hard to describe how dark some of these moments can be, even amidst the brightness of recovery. So hard to explain how very PHYSICAL (and chemical) the emotional symptoms are. I think at some points in this illness and in some ways, the agonizing physical pain is far preferable to what this disease does to a persons emotions. The more we emphasize to our doctors and each other that this set of symptoms is one of the hardest and most REAL aspects of the disease, the better we can support and protect each other. We can't really get understanding on this part from most of the world, but we all need to have that understanding from somewhere.

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