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.

invisibleillness

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.

electrical-cordsMontel 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.

sleeping

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. 

Comments

  1. Sabra Johnson says:

    I know about the car parking thing, even though I don’t have an illness. Sometimes I would drop my mom off at the door and then go such for a handicap spot, then get out of the car as able as can be. But they don’t know by looking at me (who is able and well) that I parked it for my mom who is obese and has had two knee replacements. Or when at Walmart there is not a cart for my mom at the grocery entrance so I walk down to the pharmacy entrance to get one and ride it to the other side for her.

  2. Since you came to my blog, I’m visiting yours. *HUG* I can relate a little to the fatigue. Thank you for sharing how things feel for you.

    How blessed we are that we don’t have to go through this alone, since we have Christ!

  3. Yes, yes, yes! I know many of these feelings–being a 31 year-old in doctors’ offices surrounded by eighty-somethings, not knowing which body is going to confront me when I wake up in the morning (is it the psuedo-healthy one or its evil sickly twin?), and realizing, in the end, that no matter what my illness or other circumstances, I’m just me. Thanks for this affirmation and kudos to you for getting up each day and making it work!

  4. To my sister in MS, I totally hear you. With a few exceptions you’ve written my story. Fatigue is the worst and I’m tired of hearing that I “just need to get out of bed.” If I could, I would. Who wants to sleep all the time? I feel like I’m wasting my life sleeping.

    I’m tired of the whole thing and that’s why I’ve been avoiding treatment. I’m over two years overdue for my repeat MRI to see if I have new lesions. I don’t need an MRI to tell me I’m losing more function while others are returning.

    I’m a vegetarian and have been changing to an organic diet and I do feel better. Not great, but definitely better. It may just be a coincidence and a bit of remission of some of my symptoms, but either way, organic is better so I’ll stick with it.

    ((((HUGS))) to you and know that some of us looking at you are supporting you silently, watching to see if you need our help. As for the rest, F* them 🙂

    Connie

  5. My Mother has MS and I haven’t read anything about it in a long time, it saddens me. I do talk with my Mom on average 3 times a day (45 minutes+) and we discuss our conditions among other things. Even though, I learned a lot from reading you post. It really helped to hear someone explain it, how it al happens, that’s not my mom. I know she keeps things from me. I feel you are very brave and admire that.

    I wish you and your family all the best luck in the world.

  6. Oh, I am also going to add your blog to my chronic illness blogroll on the right hand side, near the bottom of my blog.

  7. Hi! I am enjoying your blog and your matter-of-fact and accurate way of describing your fatigue. i look forward to reading more. Take good care.

  8. It sounds like MS and fibromyalgia share a lot of the same symptoms. You have the best description of fatigue that I’ve ever heard! That really describes it perfectly. I wish non-ill people could understand that. As you know all too well, it’s hard to raise a family with that kind of fatigue. There’s just not much energy left for anything else. Thank you for sharing about MS. I’m glad to learn more about it.

  9. Thanks for sharing this info about yourself and shedding some light on MS. With Fibro, my most frustrating symptom is often the fatigue as well. I like that sentence showing the difference between us and well people. When my husband complains of being overly tired I want to smack him upside the head! 😉 I don’t know first-hand yet the parking issue, but I’ve often wished I had the guts to get a handicap parking sticker so I could do it when it’s really bad. Usually I just push through it and fall apart at home *sigh* which can be pretty bad. Oh the degrees we go to sometimes just to feel or look a bit of “normal” when were at our worst mentally.
    {{{gentle hugs}}}

  10. I do know what you mean. I have a tough time walking,a failed fussion on my back. I suffer everyday in pain. I am still in my 40’s. I also got so upset when my second son passed that I had a heart attack. I don’t have high blood pressure or any problems that I thought I would have one.It was from a broken heart. So when I park I do get issues,I had someone block so I couldn’t park,yelling that its for handicapped people. I really don’t know why people do this.Its sad because I have to wait for a good day to go out and I am the type of person that I am embaressed about being not able move the way I should.

  11. I had no idea about this awareness week, and while I do not suffer directly, I do suffer indirectly. My husband was diagnosed with Rheumatoid Arthritis almost 6 years ago, and he is constantly fatigued, swollen, or achy and in pain. It is so hard to sit by and watch him, knowing there isn’t anything I can do for him, but to just “be” there. It breaks my heart.

    I wish nothing but the best for you! Take care!

  12. Wow, that’s so much to live with. You’re right, I didn’t know and never would have guessed. You handle it well my dear. 🙂 You’re such an inspiration.

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