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. Mark, I going through your writings now..especially this one, I can see a courageous person here.Facing challenges and overcoming those is not a simple thing..
    Keep up the spirit throughout your life..
    Stay blessed !

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  2. Mark, I am so very sorry that you also live with a chronic illness. It can be discouraging, frustrating and down right scary. Please know that I have sent a prayer up for you this evening.

    sending you peace……

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  3. So sorry to hear about your health problems. I hope a way ahead opens up for you for a good diagnosis and the very best possible treatment. Your blog posts are enjoyed by many. Thank for sharing your countryside with us.

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  4. I can identify with your problem 100%. I have chronic Lyme. I was very ill for years with it. One year I did a go-Fund-me and spent it on antibiotics which helped a bit. This year I inherited a enough money to seek medical care. It worked! Yeah! It would have been nice to have received some the money 15 years ago. Maybe some of the damage could have been prevented. I hope you get the help and the funds that you need. I found help at the Morrison Center in NYC. All out of network – of course.

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    1. I’m glad to hear you could get treatment, Sherry. It’s a harrowing experience to know that something is wrong with your body but not be able to do much, if anything, about it.

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  5. I am not a US citizen, but your post has made me so angry.
    Angry and puzzled that someone’s parents can let their child become homeless. I couldn’t do it to my children. They know that no matter what, they’ve always got a home here. And neither could I see my children short of money.
    The second thing that makes me angry is that people in a developed country, arguably the ‘richest’ one in the world, will not make health care universal. Here in the UK, we pay a small amount out of our earnings and get healthcare as a right. It’s a good system and it works. I don’t have to worry about how I’m to pay my doctor.
    If you take certain medications, you get all prescriptions free, and for everyone over 60, medication is free.
    Why won’t the politicians in the US use this or a similar thing?

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  6. Thank you for your honesty. It also makes me so grateful I live in the UK. Even though we moan about our heath service (we Brits are good at moaning) at least we could get a diagnosis, see a doctor, get help, know what’s wrong with us.

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    1. Yes, it really is criminal that any nation in our world today is willing to allow its own citizens to suffer and, in many cases, die needlessly, simply because of greed.

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