10 Insights on Invisible and Mysterious Illnesses

Just look around.  Chronic illness is rampant.  It’s so sad.  We’re managing illness rather than preventing it.  Autoimmunity is on the rise.  We might be living longer, but not exactly better.

In the midst of all of this, there’s a subset of illnesses that I call “invisible and mysterious” that is surprisingly everywhere, too.

By this, I’m referring to poorly understood, multi-layered, challenging to treat conditions like Chronic Fatigue Syndrome, Fibromyalgia, Chronic Lyme disease, Dysautonomia, multiple chemical sensitivities, mood disorders like depression and anxiety, chronic migraines, and other obscure neurological or pain syndromes … just to name a few.

In a quick glance, these illnesses are nearly impossible to spot in a crowd, and may even be difficult to detect in people you actually know.  But please know, they are real.

In the seven years since my diagnosis, I could barely utter the words “Chronic Lyme disease” in a conversation about myself. Although it was a relief to receive a diagnosis, it was not a relief to receive such a controversial one.  I feared being seen as a hypochondriac.

Slowly, I am learning to be honest with my experience, and be okay with however others respond to it. Invisible illnesses are very real issues that desperately need more research, awareness, support and compassion.

But I admit, it has been so much easier to remain vague and say, “Well, I haven’t been feeling too great.  But I’m hanging in there.”

It’s true, I am hanging in there — and when you get even a little bit out of the life-draining hole as I have, you don’t want to talk about the hole anymore.  

But one of the reasons I began to blog in the first place was to let others know that they are not alone in this scary, confusing journey, and to do what I can to bring awareness to invisible and mysterious illnesses and to the lives affected by them.

I humbly think, unless you have lived under the relentless pain, fatigue and strange difficult-to-put-into-words neurological symptoms of these syndromes that most of the time can’t be easily diagnosed or managed, it’s hard to imagine what it’s like.

So let me share 10 insights into the “invisible and mysterious” (at least from my perspective):

1.  We are the folks that don’t really look sick.  Sometimes there are visible symptoms.  But mostly, there isn’t any obvious physical manifestation.  We feel sick on the inside.

2.  In a desire to not completely miss out on life, we’ve learned the art of acting way better than we feel.  Bottom line — nine times out of ten, we appear much better than we feel.

3.  We have good, better and bad days.  That’s why we are “seemingly” fine one day, out and about and doing things like any other person, and then not able to meet you for coffee the next day.

4.  Plans become tentative more often than not.  We have such a hard time making plans or looking too far into the future because we never know how we might feel when we wake up.  It’s not out of flakiness, but unpredictability.

5.  For a few of us, recovery is miraculously quick and wellness is achieved by a certain diet or one super pill.  But for most, this is ONE INCREDIBLY LONG DRAWN-OUT JOURNEY — with many bumps and setbacks along the way — that requires time, patience (from everyone involved), and tenacity.  Progress can be painfully slow, so slow that it doesn’t even seem like progress, unfortunately.

6. We have weird and impossible diets.  We really aren’t trying to be pretentious or fussy or make you feel guilty as you gobble up that grilled cheese sandwich while we’re quietly nibbling on kale chips and goji berries.  We have just found that what we eat really matters to our sensitive bodies and brain chemistries.  And we’re just trying to get out the door and live life with as little inflammation as possible.  (On that note, we might be the sect of consumers that has made Trader Joe’s and Whole Foods the billion dollar companies that they are, and probably the reason why they’re popping up all over the nation like groundhogs.  You’re welcome very much! :))

7. We have spent unbelievable amounts of our savings on cart load of supplements, free range chicken, organic this and that, air purifiers, AND alternative doctor bills not covered by insurance.  Unbelievable amounts.  I just had to say that twice.

8.  We may be in our 20s, 30s, 40s but our bodies often feel like they are in their 90s … OR MORE.

9.  Having a chronic invisible and mysterious illness does not mean we are bedridden, necessarily.  Some of us have thankfully improved to the point where we can be out there and living, pushing through our symptoms, going to work, driving our kids to birthday parties and swim lessons.  It just takes a lot out of us, and sometimes, yes, it can lead to a few bedridden days if we overdo it.  Doing it all and keeping up with so and so is no longer an option.  We are challenged with needing to create our own pace, even if the rest of the world is spinning off its axis.  So we learn to measure out our energy the best we can.

10.  We don’t want pity or a lot of attention, just your awareness and understanding.  We only want to give a voice to this reality.   And we want you to see us not as mysterious people with mysterious illnesses, but as fellow fighters who are learning, by the grace of God, to laugh and play and work and live the best way we know how, even when it’s hard  … even when our often silent fight for courage and strength is not seen by others … but still undoubtedly, assuredly there.

I’m thinking, this makes us all more alike than not.