*Warning: This is a controversial topic.
When I was first told that I might have multiple sclerosis, I remember sitting on my bedroom floor crying and begging God or the universe or whatever to please give me something else. Something better. I prayed for lyme disease, because at the time, it seemed less scary. I had just started hearing about it and about how it sometimes mimics MS symptoms, and I laid down on my floor and I prayed that it was 'just lyme disease.' And this is something that other friends of mine who have also been diagnosed with lyme disease remember doing, too. Lyme seems less scary than MS. It seems less damaging. It seems safer.
And when I finally got my lyme disease diagnosis, I remember walking home from the doctor feeling SO relieved. "It's just lyme disease. I'm going to be fine!" I rode that sense of relief for weeks. It was three of the best weeks I've had in recent memory. Now that i've been living with lyme for over a year, though, I feel so silly for ever thinking that way. There have even been times on this lyme healing journey that i've sat down and muttered words I never thought i'd ever say, like "I wish this was multiple sclerosis." Now, don't get me wrong, I don't sit around wishing that all the time, and i'm not sharing this with you to try and compare my lyme symptoms to something like MS. But I am sharing this with you to help shed some light on the realities of living with lyme. Its exhausting. Its infuriating. And its incredibly misunderstood. Most doctors aren't aware of how to diagnose or treat it. And some doctors don't even believe it exists in Canada. There is no funding for patients with lyme disease, and none of the lyme disease treatments are covered by insurance. In fact, to even get an accurate test for lyme disease, you have to have your blood sent off to California or Germany. And most doctors don't treat lyme disease, forcing patients to turn to Naturopaths and Functional Medicine alternatives, often costing hundreds of dollars per visit.
If you carry a label like Multiple Sclerosis on your medical chart, doctors instantly trust that you're sick. You don't have to prove that you have neurological symptoms. You don't have to demonstrate that you're struggling with walking or balancing or writing. You're accepted as sick, and people believe you because they understand you. If you carry a label like Lyme Disease on your medical chart, however, you have to constantly prove that you're actually sick. You have to videotape your neurological episodes. You have to carry around your out-of-country blood work from doctor to doctor, and constantly make the case for why you need ______. It took me years to get a doctor to finally (and begrudglingly) give me an MRI, despite having been hospitalized several times for neurological symptoms. And that is why I found myself at times praying for Multiple Sclerosis, simply to get access to resources and funding that I just didn't have without having to "prove myself".
If you have lyme, you're never 'sick enough' to get the long-term care that you need from the mainstream medical community. Thankfully, this is beginning to change as lyme disease awareness is spreading, but progress is moving at a glacial speed. And as a lyme patient, its infuriating and isolating. Especially with new studies coming out every month demonstrating a very strong correlation between lyme disease and other auto-immune disorders, like MS, Parkinson's, Alzheimers, etc. We now know that there IS a link there, even if we don't fully understand what it is quite yet. But lyme patients are still left out of the equation and hung out to dry.
Long story short, I don't wish that I had multiple sclerosis. I just wish that our medical community prioritized lyme disease the same way they prioritize other auto-immune disorders, especially given the high probability that they're linked to each other. I wish that there was more understanding of the severity of lyme disease, and the real health risks that it poses to the general population. If caught early, lyme disease is completely curable. But if it is not caught on time (and let me tell you, it rarely is), it becomes a chronic life-long auto-immune disorder that can be just as debilitating as any other auto-immune disorder.
I am incredibly fortunate to have an amazing doctor, a supportive community, and a loving family with the financial ability to afford treatment. But this isn't the case for many people struggling with lyme, and big changes need to be made.
The first step is awareness, and spreading the uncomfortable truth about what living with lyme really is like.
So, check yourself for ticks, friends. And check your friends for ticks. And your friends friends. And your dog.
And help spread the word.
All love,
Nicole