What Invisible Illness Looks Like…for me

This week is National Invisible Illness Awareness Week.  Today, I am joining hundreds of other bloggers in raising awareness of the millions of people living with chronic illness, 96% of which have “invisible” symptoms.

Rather than try to speak for anyone else, I will simply share what living with an invisible illness looks like for me.  And, I encourage you to visit the headquarters for this week to read about others’ experiences.

The invisible illness that I live with is multiple sclerosis.  I could try to explain it in technical terms but my favorite explanation comes from Montel Williams, another man living with this disease.  I borrow his explanation often when educating people that don’t know much about MS.

Montel compares the nerves in our body to electrical cords.  If you look at the picture of the electrical cords (courtesy of doertalk.com) you will see that the actual wires (nerves) are covered by a plastic coating, in this case yellow and orange plastic, that is protecting the wires.  That plastic coating is similar to the myelin sheath that surrounds everyone’s nerves.  Your myelin is a protective covering of the wiring of our nerves.

When someone has multiple sclerosis, their immune system attacks that myelin (the protective coating).  This causes the nerves (or electrical wires) to be exposed and damaged.  The symptoms you have depend on what nerves were damaged and the degree of damage they suffered.

For me, my spinal cord has some permanent nerve damage that causes my left side to be weaker than my right.  I don’t feel the bottom of my left foot.  Those symptoms are invisible to people that don’t know I have MS.

I have spasms throughout my body, where the nerves have shorted out (to continue with the electrical cord analogy).  I take medicine to be able to sleep through the restless legs, arms, and torso body syndrome that I deal with.  My bladder also spasms, which means that I am susceptible to urinary tract infections (which I get a lot of).  Thankfully, the bladder spasms are invisible unless you happen to see me wince in pain (because they really hurt).

I also deal with cognitive issues including short term memory problems, word finding difficulties, attention and concentration issues that rival those living with ADD and I have deep dark periods of depression.  Unless you hear me say “refrigerator” when I meant to say “tired”, these symptoms are relatively invisible.

The most frustrating symptom is fatigue.  Fatigue is the most frustrating symptom for me for several reasons.  One, it is the most limiting symptom I have.  Second, it is the least understood by others.  Fatigue to someone with invisible illness and fatigue to a well person (even one who is very tired) is really two different words.  Fatigue to me is I-can’t-keep-my-eyes-open-no-matter-how-much-I-want-to-even-if-I-am-driving-a-car and if-I-push-myself-and-do-too-much-I-will-find-myself-beyond-fatigue-and-into-the-realm-of-I-can-not-move-for-three-weeks-but-I-push-myself-anyway-because-I-don’t-like-being-sick.  This fatigue means that I fall asleep while talking with my best friend (just happened yesterday), that I need a five hour nap to recover from playing with my kids outside in the morning (that was this weekend) and I need to use the scooter thing at Wal-Mart to be able to have enough energy to finish grocery shopping (so, stop looking at me like I am committing a crime by using it).

Invisible illness, for me, means that I have specialists and doctors that most people don’t need until they are in their 80’s.  That the phlebotomist at the local lab knows me by first name and we talk about her kids and my kids while she tries to make my difficult veins to cooperate.  That some days I “look fine” and the next day I can’t get out of bed and I never know which day is going to be which, though I wish I did.  That people give me dirty looks and have even said rude things when I park in the handicap spot, which has caused me to not park there more times than I can count so that I won’t be judged.  That I keep my pain level to myself because I don’t want to be one of those “sick people” that only talks about their illness and complains all the time.

Most importantly, I am just me.  Melissa.  Wife to Mike.  Mama to Jason, Jared and Matt.  Friend to many.  Sister to four.  Writer, coffee guzzler, mini schnauzer lover, speaker, planner, reader, Grey’s Anatomy watcher, Jesus ambassador who happens to be living with an invisible illness.