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The Invisible Iceberg

Multiple Sclerosis (MS) is often described as an invisible illness or the "iceberg disease". It is one of the analogies I like best. First of all it has my name written right into it. Now while my brother has adopted this moniker more than I have or ever will, I've still embraced it at times when I can relate unequivocally to the analogy or symbolism to which it is used. But secondly, it paints a vivid picture of what life  is like with this disease.

Simply put, you will likely never see more than 10% of what this invisible disease does to a person. The remaining 90% of symptoms are often never seen; but I can assure you they are as real as gravity... or air, two other things that are invisible but VERY real.

Because of this, those of us with MS (or a number of other invisible diseases or chronic illnesses) often struggle with loneliness and isolation. It can be frustrating when you tell a friend you’re tired and they say they know the feeling, because they had a big night last night, too. Everyone experiences fatigue sometimes, but people living with MS are hit hard by a kind of fatigue that sometimes feels totally overwhelming. This can be hard to explain to outsiders. For me, its especially difficult because for the past three years I have been an exhausted stay-at-home parent to three special needs kids under the age of five. Most people assume once the kids are in bed at the end of the day, it ends there. Little do they know the full extent of what it takes to get through my 20 hour day.

A magazine did a feature on me as a stay-at-home Dad recently and they published the header "we don't know how he does it". Unfortunately that stuck, and I've been labeled with that ever since. I think it bothered me so much, because as I just finished saying, they only caught a glimpse of 10% of what I'm dealing with. What would they have published had they seen the size of the entire iceberg? To be honest, I don't know how I do it... how I survive. Often I'll respond by saying, "I didn't know I had a choice".  But the truth is that with every storm in life that I’ve endured, I’ve developed more resilience. I hate it when people tell me to “stay strong because things are going to get easier”. No they’re not!  That’s a lie. Things don’t get easier in life, but rather we have the opportunity to embrace our challenges which will in turn make us stronger.  

Another invisible symptom that has absolutely crushed me, has been memory loss. While everyone is forgetful sometimes, people living with MS may have memory lapses that signal cognitive impairment, one of the most challenging hidden symptoms of MS. The ironic part of this is that I don't know / can't remember how much I've forgotten or lost. What I have noticed most in the last year or two is that specific details of experiences or situations I've been in, tend to blur together. Or other times I just blank; and its a fight to recall the vital information that I need. Grocery shopping has illuminated this issue for me. I now have to rely on a list 100% of the time, even if I'm only going out to get two or three items. And even then, just last week I went out shopping twice and purchased the exact same items, because I had forgotten to clear the purchased items from my app after the first trip, and I couldn't remember buying them - so I purchased the entire list again. If anyone needs rice or cream cheese, I now have enough to share!

Living with an invisible disease is hard to explain to a person who has no idea of the daily struggles you face. Feeling pain, feeling unwell, feeling awful on the inside, while ensuring you look perfectly normal on the outside. Putting on a brave face for everyone and quickly chirping "I'm fine!" when asked how you're doing or in response to the infamous "you don't look sick" comment.

"I'm fine" has become a common phrase of mine. Sadly, its always a lie. When I say "I'm fine" what I really mean is: I'm worried, depressed and in pain. I'm lonely, exhausted and hurting. I'm terrified, unable to work and feeling useless. I'm fighting, losing hope, broken and stressed. BUT... I can't quit. I can't stop now. My day is not over yet, my kids and my wife are still depending on me and need me to be strong. When I say "I'm fine", its my way of saying, I'm broken and exhausted but I can't focus on that right now, because if I do, I'm going to fall apart.

They say that 80% of people with chronic invisible illnesses downplay their true feelings to make others feel more at ease. This is true of me for sure. I pride myself in being honest... "too honest" at times, which still leaves me dumbfounded that I have been labeled as such in a negative way. But I've found this to be true. The times I've taken the risk or gamble with people and have been "too honest", I've regretted it or its backfired on me. People don't want "too honest". My mentor was right when he told me this was one of my weaknesses years ago. So, I downplay my true feelings. I don't lie about it, but I seldom share the full scope of whats going on. Because to be honest, (pun intended) I have never met anyone who wants to get deep into the trenches with me, and/or understands how deep the trenches really are.

So, how am I doing? "I'm fine!"

Today is World MS Day. A day to celebrate global solidarity and hope for the future. This years theme is ‘connections’. MS Connections is all about building community connection, self-connection and connections to quality care. I'm failing at all three and I don't know where to begin. Perhaps it starts here. Perhaps in identifying, admitting and owning that I'm in fact NOT fine, is the best place to start. Perhaps in doing this I will find the connections I so desperately long for and need. I don’t know, but it’s worth a shot, right?

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1 Comment

Nathan Luyendyk
Nathan Luyendyk
Jun 23, 2020

Hi Dale my name is nathan I know your ant, (I still call her mrs paul ) and she asked me to check your blog. So here I am checking it out.

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