What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

“There’s no cure.  No one knows if you’ll ever get better.”

The realities of my situation swirled in my mind as I tried to make sense out of what was happening.  None of it was news, but somehow the word hit me harder than ever before:

Encephalomyelitis

“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.

It wasn’t because it was a long, obscure medical term that I’d never encountered—it was because I knew exactly what it meant: Myalgic Encephalomyelitis, aka Chronic Fatigue Syndrome.  I knew I could no longer deny what had been ailing me for the last year and a half.

And yet it was last January when this same doctor first brought up Chronic Fatigue Syndrome, after I came in trying to find out why I felt so ill all the time and suddenly couldn’t tolerate exercise despite being in peak condition just weeks before.

She helped me see the connection between exerting myself and getting sick afterwards—every time I tried to push through the fatigue and go for a painfully slow run, I was making myself worse.  I read up on ME/CFS, and once I started figuring out my new limits and pacing myself throughout the day, I got better at managing my symptoms.

But I was still in denial—I imagined I’d somehow recover in a few months.

What is ME/CFS?

For those that don’t know what ME/CFS is, it’s a neurological disorder where you have debilitating fatigue and a myriad of other symptoms, such as cognitive problems, insomnia/unrefreshing sleep, dysautonomia (including POTS), digestive issues, headaches, sensitivity to light and sound, and more.  Over time, some people gradually get better, some stay the same, and a few get worse.  There are treatments that can help, but at the moment there’s no definitive cure.

The hallmark of ME/CFS is post-exertional malaise, where overexerting flares all these symptoms (aka a “crash”) and makes you feel like you have a bad case of the flu and scrambles your mind as if you haven’t slept in two days—and you might also have so much pain in all your muscles and joints that you wonder if you somehow ran a marathon in your sleep.

And with ME/CFS, overexerting yourself doesn’t necessarily mean doing an intense workout—it might be walking one block too far.  It might be putting away your laundry after you already ran an errand.  It might even be that you’ve exerted yourself too much mentally, say by trying to study a little too long.

No one knows for sure what causes ME, but it seems to be triggered by infection or stress in many cases—I believe mine was triggered by Lyme and that the stress of college and my eating disorder finally caught up to me.  On all the nights I binged and then exercised into the wee hours of the morning, I wondered if my body would eventually break—and then it did.

What’s ME/CFS like for me now?

With careful planning, on my good days I can do everything I need to do but not much more.  I can go to class and fulfill my graduate assistantship duties, but then I have to go home and rest instead of doing much else.  I’ve had a few amazing days when I ran a very slow mile without crashing.  I’ve also had some months when I almost forget I’m sick, but then I get too ambitious and relapse.

On the bad days, I’m sprawled on the couch with an excruciating nerve headache that makes me too nauseous to eat anything but a few handfuls of rice Chex all day.  I have a fever.  My legs ache worse than after I ran that half-marathon years ago, and all I did was walk down the driveway yesterday.  My mind is scrambled, and everything makes me cry because I’m completely out of emotional energy, too.  And did I mention I’m as weak and dizzy as when I’ve had the actual flu?

But until the other day, every time I read something about ME/CFS, despite relating to so much of what was described, I kept telling myself that’s not what I had.

It’s all Lyme, I told myself.  If I keep treating, it’ll go away.

But months passed.  New antibiotics came and went.  Alternative therapies were added and taken away.  Tests for autoimmune diseases and possible triggers came back negative.  And nothing changed.

Last September, nine months into the ME, I made the decision to stop all antibiotics for Lyme/Bartonella.  Although they had helped me in the beginning when I was diagnosed with Lyme in 2016, I felt like the side-effects had begun to outweigh the benefits.  And I’ll confess that I was (and still am) bitter that they didn’t prevent Lyme from progressing into this debilitating fatigue.

I slowly came to the conclusion that, in my case, my symptoms could be more the result of damage to my immune system that the Lyme had caused, rather than something more antibiotics on their own would heal.  Maybe there was a lingering infection somewhere deep in my body, but at what cost was I attempting to kill it?  I felt like the antimicrobials were going to kill me first. 

At twenty-three years old and after two years of antibiotics, it was in my best interest to take a gentler approach to healing from Lyme that might help me live a more normal life in the meantime, albeit with the unpredictable symptoms that remained.  So to this day, I still work with my integrative LLMD, but we’re now just building up my immune system more naturally to fight off whatever may still be lurking.

But everyone with Lyme is different.

I can only speak to my own symptoms and experiences.  I know plenty of people misdiagnosed with ME/CFS who get better on antibiotics for Lyme/co-infections, and I’m not here to deny the enormous amount of people who have a persistent infection—this absolutely happens, but it’s misguided to assume antibiotics are always the answer for everyone with persistent symptoms.

And for the record, I’m as much of a Lyme advocate as ever even with a new diagnosis, because I don’t want anyone else getting Lyme and going on to develop ME/CFS like I did.

I’ve simply become more convinced that there’s no one size fits all approach to ME/CFS or late-stage Lyme or chronic Lyme or post-Lyme or whatever else you want to call what I have now, and each of us knows our body best.  

“Are you saying I have ME?” I asked my doctor last week.

“Yes, I think you have it,” she replied, surprised I was acting like I didn’t know—it indeed wasn’t the first time she’d said so.  And yet, it was the first time I was able to hear it.

“It gives us a context to understand the immune deficiency, the POTS, the joint pain, the PANS—it’s all tied together by inflammation and immune dysfunction.”

I left the appointment with a prescription for my latest issue—a full-body rash which was apparently just another aberrant immune response related to an ME crash—and I left with a mixed bag of emotions over the diagnosis I’d been trying to deny.

I felt validated being reminded that I hadn’t been making everything up, but not a moment later, the weight of having an illness at age twenty-four that no one knows how to fix knocked the wind out of me.

I wanted to scream.  I wanted to run away from my life.  I wanted to shake my fist at the cosmos and demand this disease be taken from me.

“I don’t deserve this!” I imagined myself yelling into the void.  “I have dreams! I have plans! It’s not fair to recover from PANS only to get another disease!  I’ve spent years working towards my career, and now you’re trying to smash my future into a million pieces?!”

But the truth is I’ve been wrestling with these thoughts for over a year, ever since the fatigue began—maybe even for the last five years since I was diagnosed with PANS.

When I was in the worst of PANS, I used to worry that I’d never get my mind back—that I’d never have my personality again, that I’d never not be depressed, that I’d never be free from the tics and involuntary movements that plagued me all day long.  As I tried treatment after treatment and relapsed again and again, I worried that I had no future other than one with PANS.

It may have taken several years, but I did recover.  I’m myself now, I haven’t had a depressive episode in months, my OCD is under control, and the movements only occasionally reappear—and even then they’re usually imperceptible to everyone but my family and doctors.  I’ve made it over a year without a PANS relapse, which is the longest I’ve ever been mostly in remission since I was diagnosed.

And so, I remain optimistic that I’ll recover from ME as well—even if it also takes several years.  Like PANS, it’s an inflammatory neuroimmune disorder (brain/nervous system inflammation).  I have to believe that PANS and ME in my case are just two different sides of the same immune dysfunction coin.  If I can get better from one, why can’t I get better from the other?

I have another reason to be hopeful:

Last May, when I’d started having PANS flares again, my neurologist put me back on monthly IVIG for my immune deficiency and PANS.  It helped those issues a great deal, but within a few weeks, I also noticed I was crashing less from everyday activities.  Within a couple of months, I had built up to running a 14-minute mile again without triggering a crash—a far cry from my sub-six record and the ten-mile long runs I once lived for, but it made me believe I could get my old life back someday.

I have at least another year of monthly IVIG ahead of me, so I like to hope I’ll keep improving—what if it were eventually my cure?  My doctors say it’s possible.

Even so, recovery from ME hasn’t been a straight line, just as it wasn’t for PANS, either.  I started to relapse with ME when I went off to grad school last fall and when I took a three-month break from IVIG.  And I’ve gone backwards lately because apparently I wasn’t ready for this kind of part-time job.

Every day, I wonder what the future will hold, but I did so long before the mention of ME last week.  Although it seems scary to admit that there’s no proven cure for this illness, if this is the case it was the case long before I put a label on it.  Nothing has changed between last week’s appointment and the day before it—that’s important to keep in mind when getting a difficult diagnosis.

Ultimately, I’m as unperturbed as one can be in this circumstance.  I feel so incredibly fortunate that my ME is mild compared to so many others’ and that I’ve been able to move forward in life in spite of it for the last year and a half.  I’m still me, even if I have ME, and I refuse to let an allegedly incurable illness define the rest of my life whatever the outcome may be. 

And you have to remember that lots of smart people are researching neuroimmune diseases, so ME/CFS and chronic Lyme may have more obvious cures before too long—at least, this is what I like to tell myself.

Nevertheless, I’d be lying to say I’m not scared of what’s in store in the meantime.  But I’ve realized that not even a healthy person knows their future.  Any one of my healthy colleagues at grad school could be stricken with a horrible illness or get into a life-altering accident, so my uncertainty is part of the human condition—I just happen to be more acutely aware of it.

As I continue to venture forth into the unknown, the best I can do is focus on the here and now and all that I still can do—not on what may or may not happen.  Being sick has given me a sense of urgency to live as much as I can, however I can, while I still can—and having a ME diagnosis is simply another call to carry on in this manner.


More info on ME/CFS: What’s ME?

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5 thoughts on “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

  1. hey, so much similariteis we have (PANS, POTS, CFS, Hashimoto and Sjogrens here… most of it on and off, confusing even Gods, not only human doctors and me 😀 ), are you sure your fatigue is not part of POTS? for me, “ME” responded to IVIG so much, i know POTS and ME are not the same, ME is more ‘central’, but i guess maybe ME could be consequence of POTS , as dysautonomia is worsening gut function so more prone to SIBO etc.

    my ME become more nasty after ruinng my gut w lyme treatments.

    i’d like to talk to you as we have sooo many similarities, please leave me email we talk

    Like

    1. Wow, lots of similarities indeed! I think a fair amount of my fatigue was from POTS, but it’s not just fatigue. I feel like I have the flu after I over-exert, which is more of an ME symptom than POTS. I seem to have both. I wish I’d stopped Lyme antibiotics so much sooner. Sending you an email.

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