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Do you stay silent about your Lyme experience? My 4 reasons to talk about how you feel

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I have been wanting to talk more about Lyme and the co-infections, but something kept getting in the way.

Turns out, I had a lot to share, both as someone who has had chronic Lyme and the co-infections since I was a kid, and as and practitioner of Acupuncture and Chinese/East Asian medicine herbalist of 20 years (whose favorite topic is chronic infections…even before I knew I had Lyme). 

But after writing an article or making a video about Lyme and the co-infections, I couldn’t hit the “share” button. 

I couldn’t because my body wouldn’t let me. I would balk like a horse refusing to take one more step no matter how much you tug and plead. 

At first, I didn’t think much of this. It is normal to be nervous about starting new things or sharing about a new topic, right?

But as time went on, I paid more attention to how my body and being were feeling and what sorts of messages it was trying to convey. 

And after tuning into that freeze response while my finger hovered over the “share” button on my blog or on YouTube, I got the message loud and clear. My body was saying:

Don’t do this. They won’t believe you. 

Sharing leads to pain. It’s safer if you keep your mouth shut.

Once I realized what was up with my body, I knew why. It’s no mystery.

If you have Lyme, the co-infections or other chronic infection, chronic illnesses, chronic fatigue, chronic pain or the like, then you probably know, too.

You get used to not being heard. You get used to the medical system completely ignoring and undermining you. And if you are like me, perhaps you have learned to stay silent because it is easier that way.

Staying silent might feel better than feeling invalidated, misunderstood and perhaps even shamed (because what’s happening to you doesn’t fit the mould of what “should” be happening). But staying silent doesn’t feel good, it just feels less risky than yet again sharing your story and having yet again another person not get it.

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Over a number of months, I reflected about this phenomena. Not so much as a way to get out of it, but to understand what really was going on.

I got to thinking why I want to talk at all about Lyme and the co-infections in the first place, and that is what this article is about.

If you want to listen to a video/audio version of this article, check out this video. And if you want to learn more about Lyme, the co-infections from my perspective as a clinical herbalist and practitioner of Chinese Medicine and what I’ve learned about living with chronic illness, fatigue and pain over the past 28 years, please consider subscribing : ) 

So without further ado, let’s get into why I think we need to talk about Lyme and the Co-infections…

1. It’s actually OKAY to talk about how you feel while having Lyme and the Co-infections. 

I had to ask myself: If it feels so bad to talk about Lyme and Co, why even push myself to do it? 

Simply put: It is okay to talk about how you feel and what you are going through, and feel safe while doing so.

Yes, it IS actually okay, even if the god-like, all-powerful medical doctors don’t listen to you.

I had to reiterate and re-connect with this core belief of mine again and again a way to re-learn how to share.

People with Lyme and Co-infections are more often than not literally gaslit by the medical community. We have learned to stay silent because it is hard to be continually not believed by the powerful authority which doesn’t believe in the disease we have.

Even if I did indeed felt safe and empowered to share my story as a someone with chronic illness, chronic Lyme and the co-infections, chronic pain and fatigue, I couldn’t help but think:

ButI don’t want to be a complainer

If I talk about symptoms and suffering and being gaslit and how much my life has been hampered by this disease, does that just make me a complainer?

Or, what the difference between venting/complaining and sharing?

Although I DO want to be mindful about not being overly attached to my own story as someone with a chronic illness, I think the bulk of me even asking this question stems from years of having to pretend like I was a normal person when I was indeed not.

It is okay to complain sometimes, too. I, for one, do not judge others when they complain, because it can be therapeutic and important for gaining insight and simply letting it out.

Another objection I felt come up was:

But…Lyme and Co are so different for everyone, how can my individual story be helpful?

I wondered if being so self-referential would actually help anyone on their journey. 

Honestly, I don’t know if what I have to say will be actually tangibly helpful to anyone else. 

Even if what I share doesn’t help someone exactly, perhaps it can give them ideas to look into or what NOT to look into.

2. We need to talk about the CO-INFECTIONS more. 

I am on a mission to talk about the co-infections more. Why?

The co-infection can be just as bad if not worse than Lyme. And I feel that the co-infections are therefor just as important if not more than Lyme, but we often don’t talk about them as much as Lyme.

Personally, I felt woefully ill-prepared to deal with the world of co-infections. 

Within the Lyme community, we have heard “Lyme, Lyme, Lyme” but now, slowly, we are hearing, “Mycoplasma, Mycoplasma, Mycoplasma” and “Bartonella, Bartonella, Bartonella” just as much. And that is a train I want to be on board.

3. Personal narrative and health storytelling is therapeutic.

Talking about how you feel and your health story IS part of the healing process.

When you tell your personal health story, you give yourself a chance to create (even for a moment) a beginning, middle and end to our ongoing, often overwhelming saga of our life experience.

Sharing your story is like a deliberately putting it into smaller chunk so they become more easily digestible. 

Also in personal narrative, you can see yourselves truly as the hero of our own journey…simply because you are still here to tell the story.

Migraine story research

Once I read some research that showed that if people with migraines were able to tell their full migraine story to their care provider, they had better outcomes in the resolution of their migraines than those who were not able to tell their full migraine story.

The problem with telling the migraine story is that it took, on average, 8 minuets to do so, and the patient was often interrupted by the practitioner before they were done.

I think there were multiple things going on with how the telling of the migraine story could help someone get a better chance at resolving them.

On a practical level, if the whole story is told, more clues are conveyed that could be useful for a more accurate diagnosis or understanding to what is going on.

But I do think that simply telling your story is therapeutic in and of itself. It sure feels bad when you CAN’T tell your story, and one way to remedy that is to go ahead a tell it.

4. Clinical pictures are important for understanding Lyme and the co-infections, more-so then testing. 

This may be controversial, but hear me out:

How we feel is MORE important than what a test says. 

Yes, tests are getting better. IgeneX tests are about 60% accurate. But still, clinical symptoms, are the gold standard for making diagnosis rather than test results. 

That means we need to talk about our experiences and symptoms because they hold the clues we need to move forward.For this reason, I want to normalize getting comfortable talking about how we feel.

In Conclusion

In the end, I believe we DO need to talk about Lyme and the co-infections, because the more light we can shed on chronic pain, chronic illness, chronic fatigue and chronic infections, the better. 

Many of us have gone rouge and are DIYing our treatments, often out of necessity and trying to cope the best we can with less than adequate resources. For that reason, we need to keep talking and sharing.

This is a very personal reason, but I want be more comfortable sharing my Lyme story even if it is messy and all over the place. If I wait until I am more presentable or professional, I may be waiting for a loooong time and never share it at all!

No matter where you are in your Lyme and co-infection journey (or chronic illness, pain, fatigue – whatever), you are just as valid and worthy of being heard and having a voice.

Let’s create a community of open sharing where we are seen and heard as people with chronic illness out of mutual respect and benefit.

Thanks for listening, and best of luck wherever you.

Take good care, 

Celia

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………..

The Cure Unknown – the political and medical quagmire of Lyme

https://www.lymedisease.org/book-review-weintraub-lyme-disease/

Under Our Skin 1 & 2:

https://underourskin.com/#home-undero…

Dr Rawls – about testing

https://rawlsmd.com/health-articles/t…

Buhner Lyme (as well as Chlamydia and Spotted Fever Rickettsiosis) Book

Buhner Bartonella and Mycoplasma Book

Buhner Babesia, Anaplasma, Erlichia Book

Toxic: Heal your body from Mold toxicity, Lyme disease, Multiple Chemical Sensitivities and Chronic Environmental Illness by Dr Neil Nathan

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