The Hidden Symptoms of Rare and Chronic Disease

Many people who have neurological conditions struggle with hidden symptoms that go unnoticed simply because they’re invisible.

Personally, I deal with most of these on a regular basis, but my situation pales in comparison to the others I know. I’m not writing this looking for sympathy, rather understanding. I’m writing this post to shine a spotlight on these symptoms in the hopes that it brings some awareness around this issue.

I recently took a poll of others with conditions like mine (Ataxia, Multiple Sclerosis, Parkinson’s, Huntington’s Disease).

Some key takeaways:

  • 36% said they struggle with apathy or lethargy
  • A quarter of those polled (758) describe being regularly fatigued.
  • Almost 40% of people polled revealed that they deal with feelings like stress or depression.
  • The majority of people reported multiple symptoms.

There are also many cognitive issues like brain fog, poor judgment or confusion which everyone with a neurological disorder experiences to some degree.

The symptoms I have mentioned here appear to be the most common. Everyone, however, will experience these symptoms in different ways of varying intensity. I’ll do my best to explain them and maybe how they manifest in my life.

In my case, these symptoms seem to come from nowhere and exist for no reason. I mean, I understand I have a neurological disease, but many of these don’t fit as part of my personality necessarily. I know that doesn’t make a lot of sense. What I mean to say, is that I don’t always feel like the “me” I know.


Stress is defined as a reaction to an external stimulus. In this case, it could be something someone says, the loss of a job, a fall, etc. It is a very individual thing, experienced differently by everyone.

On the other hand, anxiety is more intangible. Sort of a feeling of impending doom, it can often start as fear. Anxiety can be a feeling of being overwhelmed. Everyone gets a little anxious, but it feels amplified by 100x sometimes for me and I’m sure for others in my situation.

Both stress and anxiety can be something that happens after one’s diagnosis I suppose. But I can honestly say that I’ve felt these feelings grow over time.

Stress and anxiety can lead to many other physical symptoms including:

  • stomachache
  • muscle tension
  • headache
  • rapid breathing
  • fast heartbeat
  • sweating
  • shaking
  • dizziness
  • frequent urination
  • change in appetite
  • trouble sleeping
  • diarrhea
  • fatigue

Many of the above “side effects” can also occur as a result of the other symptoms below.


I feel a sort of a disconnect between me and my experience of depression. I’ve always been an upbeat, happy-go-lucky guy, but depressive feelings have grown in me for many years.

Before I started actively managing it, things got to the point where I didn’t really care if I lived or died. I wouldn’t so far as to say I was ever suicidal, though. There was still always a desire for self-preservation, but I guess we all have that.

One way in which this manifested itself was drinking. It was always a social pursuit for me. I never drank alone at home. But when I did drink on the weekends, it was always in excess. There were a handful of occasions where I actually drank and got behind the wheel (this may be a case of impaired judgment too; see Cognitive Issues below). I knew what I was doing. Thank God I never hurt myself or anyone else.

I’m pretty sure this over-indulgence of alcohol combined with an appetite of eating all manner of junk food, left me with two hernias – one on left and right sides, which eventually were removed through surgery.

Depression is closely tied to anxiety and stress.

If you are depressed, make sure you talk to someone about your feelings. I tend to keep to myself, which isn’t the best approach I realize.  But this issue has dissipated since I’ve been keeping on top of it. More on this later.



Fatigue is a tough one. Sometimes inexplicable pain/soreness can leave us in bed longer than normal. It’s difficult for others to understand why a normally vibrant individual may be tired.

It is not always a result of something we do or don’t do.  Instead, like the others here, it is a symptom of a bigger problem.

Some of the signs of fatigue:

  • waking up exhausted, even after a good night’s sleep
  • not feeling motivated to begin the day
  • inability to do activities you enjoy
  • sudden bouts of exhaustion that go away and then return
  • shortness of breath.

Some potential solutions to address this problem can be found in this Harvard Medical School article. Below I also provide the tactics I’ve used to reduce these symptoms.

Apathy or Lethargy

Apathy is not something easily described. It’s the one feeling which really isn’t a feeling at all. Instead, it’s the absence of feeling. It is not caring, not loving, not laughing. In some instances, I’ve not wanted to communicate with my family. In extreme instances, I’ve found myself having no desire to remain connected with anyone. I describe it as the absence of humanity. It can bear some similarities to schizophrenia, although, there is no disconnection with reality.

Lethargy can come across as laziness which I find frustrating at times. I know I’m not a lazy person even though I may come across as that way sometimes.

The key difference between lethargy and laziness is intention/choice. Lethargy is a lack of energy or enthusiasm and a symptom of a larger disease or disorder. Laziness is simply an unwillingness to work or expend energy.

Anger, Fear, Guilt, Frustration, and Self-loathing

I have experienced all of these emotions on an intense level. I still do sometimes. Sometimes they seem to come from nowhere and go away just as quickly.

Many times, though, they’re by-products of having the condition that I do.

Let me try to illustrate some ways these feelings may show up:

  • Anger over having a disease that’s incurable or my inability to fix it.
  • Anger about the treatment I receive from others who don’t understand my condition.
  • Fear about the future. What will happen to me? How long will I be able to do the things I love?
  • Fear of falling and injury.
  • Guilt over not being to take of the family or hold down a traditional job.
  • Guilt over having to be taken care of/not being independent.
  • Frustration with not being able to move as you once did.
  • Self-loathing; hating yourself for being in this situation or hating who you are.

Cognitive Issues

I didn’t add this into my poll, because I knew it was a problem for everyone I would be surveying. If you or someone you know has a brain disorder, cognitive impairments are standard. For some, there are minor issues. For some, they are major.

Cognitive issues are wide-ranging and vary by individual. They may include:

Memory issues (short-term, long-term, or both) – For me, my short-term memory presents the biggest challenge. My long-term memory has always been really good. Associating the thing you want to remember with something you already know is one simple tactic you can use.

Confusion (about people or concepts) – I’m usually pretty good at remembering people, faces, and names. I distinctly recall a few occasions, however, where friends told me stories or jokes and I just had this blank stare on my face. Some even mentioned it. Sometimes I just don’t get the simplest of concepts and can be a bit slow.

Identity confusion – This hasn’t been an issue for me. One may not recognize others or even themselves. I think this would be more common in the case of Alzheimer’s or similar.

Impaired judgment – I definitely struggle with this although I think it’s gotten a lot better. This would include decisions that seem silly, irresponsible or even inappropriate.

Changes in mood or behaviour – See any of the emotional symptoms in this article. Emotions originate from thoughts. And well, if you have a brain disorder which affects how you think, your mood and behaviour will change to reflect it.

Difficulty planning and carrying out tasks – This is a large problem for me, although I am constantly trying to improve. It’s often difficult to make the simplest of decisions. I find I get easily distracted and scatter-brained.


Although there is no solution to my disease or for many others, I am exceedingly hopeful. I still have a long way to go, but I feel the best way to address the above is with the tactics I’ve listed below.

Definitely consult a doctor. I would urge you however to use caution. Talk to others in your situation. Find out how their lives are affected by drugs they are given.

Personally, I prefer a more natural/holistic approach.

Move My Body – Movement is medicine. There are lots of different ways we can move. The main idea is to keep moving.

Feed My Brain – A few years back, I read a book (The Wahls Protocol) and adopted a diet which really helped me with my symptoms. I assure you that many problems can be addressed by a closer examination of diet.

Stretch My Soul – Prayer and meditation in silence/solitude are key to emotional and mental well-being. The key is to start. Even if you don’t know what to do at first. I highly recommend this book.

Expand My Mind – Instead of wasting my time (and brain cells) watching TV, I try to read a lot, watch instructional videos, take course where necessary. This is one book which I found useful for improving my memory and thinking.


What is Stress?

The Difference Between Stress And Anxiety

What Is Depression?

Tired of being fatigued

Chronic Fatigue Syndrome

The Curse of Apathy: Sources and Solutions

Anxiety Frequently Causes Lethargy


Please share this post. It’s important that others become aware of the symptoms we have to live with.