Reaching Out for Support with a Misunderstood Illness

Misunderstood Illness

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you. For which patients have to help each other find physicians. Who have had to fight to find even a sliver of support because the public is so disastrously misinformed about the true nature of their illness. Who have had limited or no help from the same group of organizations that would otherwise smother you in understanding and compassion, had you gotten a more acceptable or understood disease.

I wish I knew of the other people whose diseases didn’t have a cure and who’ve also exhausted all of their treatment options; treatments that tiny organizations of doctors have had to figure out, mind you–sometimes at the risk of being jailed–because if we did things the government’s way, we’d already be dead.

Where are the other people who simultaneously are so happy to be alive, valuing life immensely, yet who are also exhausted with day-to-day living? Who understand my uncertainty about the future because they, too, may be redirected from even having one? And the grief… Oh, the grief. There is no turning back this time. I grow more fatigued, more nerves die, my pain meds become stronger, and on rough days–in rough patches–the grieving is literally all I can handle. And it’s incredibly difficult to handle, when I feel I have no one to talk to about this who understands. Where are the support groups for people like me?

It’s almost impossible to find someone who’s tried the fight against late stage Lyme disease, in particular, and come to the same wall that I have: The understanding that the treatments have a greater chance of killing me than the disease itself, and that despite the severity, I stand a better chance at having a life if I let go of the need-to-treat and focus on LIVING.

No, most people aware of having advanced neuroborreliosis–aware that they have ANY progressive illness, really–approach it with a “die trying” attitude, no matter what. That works for some, as I’ve said many times. But I have neither time nor valuable energy to invest in treating a disease that cannot be treated without bringing me down with it. It’s because I’ve watched too many people actually die trying, that I know better. I’ve experienced on my own and witnessed enough in others to know that–unlike the inspirational recoveries in Under Our Skin–some cases are too advanced to treat, and attempts to do so actually cause the disease to advance quicker because the treatments are so harsh on systems already worn down. I am one of those cases, and I am not making that “mistake” again. I barely got through the first time I “woke it up”: We’re talking brain damage, endocarditis, almost needing a heart valve replacement, being bedbound 98% of the day and being plugged up to an oxygen machine. I fought back against all of that, but now, even attempts to gently fix the parts that are worn down, have almost hospitalized me, for the umpteenth time. And I don’t want to be remembered and honored for fighting a disease until it killed me, I want to be remembered and honored for living in spite of one.

It’s not as easy as just finding support groups for other people who are Buddhist, or have myalgic encephalomyelitis, or chronic Lyme, or bartonellosis, or mycoplasmosis. I was once part of a Buddhist support group for those with illness, that tried to enforce a sense of general support instead of conversation about specific diseases. It worked very well when people followed that, but people bring with them all of their life experience and inherited coping mechanisms, for better or worse made amplified by their chronic disease, and it became difficult to enforce that rule without the group splitting into camps. Not very helpful, and it just added stress.

The M.E. communities are usually full of people who don’t even have M.E., but CFS, so they don’t actually live with my symptoms or prognosis. And the only community specifically for M.E. I ever found actually barred users from even mentioning Lyme disease. It’s not my fault I got both, and I need to be able to talk about it. Since a major part of M.E. is accumulation of infections coupled with an inability to fight them off due to reduced natural killer cell function, one would think it extremely important to talk about how to deal with this…? Let’s not even get into the fact that bartonella is more of a threat to my health than Lyme, because most people don’t even know what bartonellosis IS.

AND DON’T EVEN GET ME STARTED on the Lyme disease “support” groups. I am the horror story people use to scare others into getting treatment: Treat now, or the disease will turn into a serious, disabling condition and then it could be too late! Yeah, well…

And try telling those people that you’ve made the heart-wrenching–but I think very brave–decision to stop treatment, and it’s like you’ve told them you murder bunnies in your spare time. How can you do that? Don’t you know what will happen? There’s still hope, don’t “give up,” you’ve just done it all wrong, just try this, and that, and this…

I’m sorry my story scares you. No, we didn’t catch it in time. Yes, it is too late for either natural or pharmaceutical treatment to do anything (besides give me life-threatening herxheimer reactions). But my life still matters, and I still need support. And yet when I’ve reached out with a fragile heart, I’ve gotten judgment and condemnation instead.

For some reason, I had so much more support when I was still in treatment. Well, I’m still fighting for my life, I’m just doing it in a different way.

It’s similar to when people with cancer realize they need or want to stop treatment and focus on life, and must tell everyone. It’s not always pretty, I get that. I researched a lot of support resources similar to this when I made my decision a year and a half ago, and it was extremely helpful… But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.

It’s essential for people with severe and especially misunderstood illness to build a support network, and the circumstances here are critically relevant to how someone experiences being sick in this way. Lately I’ve felt it particularly important to address this before things get more.. well, you know. But how?

So, if you understand this post, or know someone who might relate to it, please don’t be shy about sharing, commenting, or contacting me. To everyone else, thank you for letting me share my story.

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