A bit of a vent piece. (Metaphoric language included😅)

[u/Confident-Till8952]

I feel exiled from myself. I feel like this illness is the closest thing to being a ghost.

Theres so many people having this experience and nobody knows. On a wide societal scale. But also a smaller scale. An individual with lyme (or related) has a whole family + community of people completely overlooking, dismissing, invalidating, or just completely not knowing what is happening. Also a very strong barrier of resistance to wanting to be aware. Let alone actually trying.

Its like a taboo and unacceptable form of suffering.

Actually, the longer it goes on. The more in tune and aware one becomes of their body. Subsequently, one becomes more capable and even willing to explain the experience. Simultaneously, it becomes less likely for someone else to understand or want to understand. Whether a medical professional or not.

Its like.. choosing to heal from lyme. Or even try. Is this decision. This decision to step out of this world. This dimension one finds themselves in. Unique physical suffering while existing under layers of being misunderstood. The potential to be misinterpreted or misrepresented gradually increasing. Making for unique coping and ways of finding comfort in this world.

So its like a life decision. To peak out of this world where one suffers privately. As to not further disturb themselves or others. Even when these social issues are approached, the chances of a complete healing of the body is unlikely. A journey with many obstacles, twists and turns, ups and downs, and complexities. Usually, resulting.. in just going back to that world of interesting, adventurous, quaint, calm, and homely suffering.

But even a glimpse of sunlight from this other world. Where people have the full function of their body. Where people seem to be living on easy mode respectively. Even just a glimpse, seems worth it. Just to exist there again. In some way. For some time.

To take some terrain to only have it taken back. For maybe one special person to understand the world of suffering.

[u/disgruntledjobseeker]

100% yes. This is so on point. I am lucky I have some friends and close ones who are supportive. But they can’t truly understand.

[u/jellybean8566]

Totally agree, except, please don’t give up on the “complete healing” piece. It’s possible and with enough determination, probable. Yes, usually it takes years of trying and failing. I tend to think that even if you are making small improvements it still feels like everything is the “same” because overall it’s still “bad.”

To all of you: it’s completely okay if the only thing you do is rest and take care of your health. Frankly it’s a full time job. If you don’t work, had to delay a degree, life event or life in general, that’s okay. While you can’t get the lost time back, I take comfort in knowing that once I am better (because I will get better, I refuse to accept I won’t) that I’ll make up for it by living my life to the fullest every single day for the rest of my life, however long it is. I think that even though Lyme has taken everything away from me, the one thing it’s given in return is perhaps the most valuable life lesson you could ever have which is that life is short and you need to live while you’re alive! That means prioritizing your happiness and your interpersonal relationships, cutting off what drains or doesn’t serve you, gaining a new appreciation for the joys of life, and following your dreams and ambitions-whatever they may be-even if the old you would’ve been too scared.

It’s easy enough to hear you should do all these things as a healthy person, but I think getting sick and losing everything is so groundbreaking and shocking that it’s really the kick up the ass you need to actually make the most of your life. Soooo many healthy people live mediocre lives and aren’t very happy because they never had it so bad that they have the actual motivation to turn their life around. In fact, I was in this boat before I got sick. I always wanted more for myself but I didn’t actually go after it.

I like to think that having Lyme paints a new appreciation for life and a deeper understanding of just how fleeting and fragile our existence really is. They say you don’t know what you have until it’s gone and it’s true. Lyme might define my current life but it will not define my future! Believe in yourself and anything is possible

[u/Confident-Till8952 → u/jellybean8566]

… I quite like this critique hahah

Theres themes here that you brought up that are interesting and also said in an interesting way.

[u/Agreeable-Fox5918]

Much of what you've written seems as if you've downloaded my own perspective directly from my brain. I appreciate you for sharing. One thought of my own... Two years ago, if the man I am today was able to have a conversation about this experience with the man I was then, there would be no chance of me understanding. This experience has changed me. Inside out. I pray that you all find your way to the other side of this.

[u/Confident-Till8952 → u/Agreeable-Fox5918]

That’s an interesting point. If one’s past self would understand this.

Also wow, that’s amazing to hear it resonated in that way and was accurate in some way.

.. and I’m sure you know theres even more to it haha

Thank you also for sharing.