Living Life with an Undiagnosed Chronic Illness

Homegrown yellow tomatoes

Contrary to what you might think from reading Mark All My Words, I prefer not talk about my private life and health. There are many reasons for this. Foremost among them is the fact that these are topics I prefer not to drag into the public eye. After all, what right do complete strangers have to stand in judgment over me when those same people are doing nothing to help?

But this rationale only goes so far. The truth is, we live in a public world. We live in a culture of constant scrutiny. Beyond that, I run a public blog. On this blog, I talk about many aspects of my private life. And because my health affects both my life and my blog, it’s something I need to address.

So here goes.

Like millions of Americans, I live with a chronic illness. I experience a whole host of daily symptoms that are occasionally mild, occasionally debilitating, and occasionally terrifying. I’m not going to get into detail about those symptoms for a whole host of reasons. But, rest assured, they’re there and they take a toll.

Unlike most Americans who live with a chronic illness, however, I have no health insurance. I’m also not wealthy, which means I can’t pay for a doctor’s visit out of pocket. So that means I have no way of obtaining a diagnosis for my illness and no way of treating it. As a result, I’ve learned to live with not knowing.

One of the few things I do know about my illness, though, is that it originated when I was homeless at the end of 2005. I was in college at the time, and my expenses were exorbitant. My family contributed nothing — and I mean literally nothing — to my college education, despite the fact that my dad was a research pharmacologist at the time and made a salary of more than $100,000 a year.

While homeless, I ended up with an apparent bacterial infection that resulted in a case of meningitis, most likely the result of a tick bite and consequent Lyme Disease. At the time, I was unfamiliar with Lyme Disease and the range of symptoms it could produce. As a result, I had no idea what was going on or what I should do about it. Not to mention, Lyme Disease frequently produces decreased cognitive function — which was equally true of my case and made it impossible for me to rationally explain my symptoms to a doctor.

So I did the best I could without seeing a doctor. I made radical changes to my diet and activity level. I got rid of everything that I knew to be unhealthy, from carbonated beverages to twinkies to pizza. I made sacrifices most people can’t even imagine. I made a real change in my life. And I stuck with it.

But it wasn’t enough.

In February of 2018, I had another apparent case of meningitis, presumably the result of Lyme Disease. Once again, I don’t know for sure if that’s what it was, because I don’t have health insurance and I have no way of obtaining a diagnosis. But the symptoms I experienced in 2005 returned with a vengeance. They were so bad, I honestly thought I was dying.

But I didn’t. I lived. I made more changes. I adopted a full paleo diet. I started taking omega-3 fatty acids. I started taking turmeric. I started running more. I started working out more. I made a priority of getting a full night’s sleep. I did everything I could to make a real change. And, once again, I stuck with it.

Homegrown yellow tomatoes in outstretched hand

Yet there are still days when things go wrong. When I have barely enough energy to get out of bed in the morning. When I feel shooting pains and numbness in regions of the body I didn’t even know existed. When my body feels like that of a ninety-year-old. When it feels like nothing I’m doing is good enough, even though I know it is.

And I’m not alone.

As I said at the beginning, there are millions of Americans who live with chronic illness. Some of these people have health insurance; some don’t. Some of them are able to get treatment for their illness; some aren’t. Whatever the precise details of the situation, it’s always hard. Some days it’s so hard, it feels unbearable.

And this situation is worse when no one helps. When your own family treats you like nothing more than a burden. When people cross your path and look at you with contempt because they think you’re simply not trying hard enough. When the culture at large treats you as nothing but a liability when you are in fact a human being, a member of a community, and a citizen of this planet.

And you, like anyone, deserve a decent life.

So, if you’ve been following Mark All My Words for any length of time and have noticed a shift in it lately, please be aware that it’s not coming out of a vacuum. It’s not some rabbit I’m pulling out of a hat to elicit your sympathy. It’s not an attempt to make you feel sorry for me. It’s just the truth.

28 thoughts on “Living Life with an Undiagnosed Chronic Illness

  1. Before being aware of your circumstances, I was aware of your beautiful writing and photos, appreciative enough to have shared one of your posts on my own blog. Now that I know the driving force behind your blog, it seems just that much more beautiful. Some choose unfortunate paths in response to tragedy while others choose to walk toward charity or serenity or beauty or other such good things. I’ve lived through more than seven decades, which means I’ve had the opportunity to witness the indomitable human spirit. You, Mark, are indomitable. My wish for you is that you do eventually get a diagnosis and maybe even a cure. If this happens, don’t stop seeking beauty.


  2. “And since there’s about as much chance of free, universal health insurance being implemented as there is of the Easter Bunny being elected President, I need to be proactive.”

    I admire your courage and integrity. I knew a woman who has Lyme. Haven’t seen her for awhile, but I know it’s hard for her. If you read my blog, you know that I too had surgery and man! is it hard! Wow! I won’t go into details, but before that I was the picture of health. So, like you, I try everyday to get better. Like I always tell my daughter, Never give up.

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  3. I just entered the chronic illness world in August 2019. I can’t imagine being homeless on top of all the scary health stuff that happened to me. You’re obviously strong. You’ve got this, one spoonie to another.


  4. Welcome to the club of living life with chronic illness. It might surprise you but I am actually happy that I survived Lyme without even knowing that the disease existed many years ago, and lived with it without any treatment. It came back with a vengeance 15 years after when too many things and stresses were packed together in a short space of time. As a known trigger of autoimmune conditions it was Lyme, I believe, that caused many or al least some of them. As you, only by choice I did not investigate in depth my condition and peculiar symptoms coming and going. Extra bad things on the surface, cried out for diagnosis, like coeliac and Hashimoto, were diagnosed, but with the rest I let it go and made a conscious choice to manage my life and try to be as happy as I can in the process. Was and is it easy? No, but that’s life, nothing real is easy. I can only add that the choice was made not because of the lack of access to doctors, tests and treatments, but because invasive and persistent testing actually does a lot of harm to the body.

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