I Need You To Stop Trying To ‘Help’ Me

I was polite the first time I was offered long distance reiki as a cure for my disease. I even recall saying thank you. I was newly diagnosed. I needed all the help I could get. And, after all, she was just ‘helping.’ The second offer came from a completely different person some six years later. There was no thank you. At first, I ignored it. Then, frustration got the best of me and I cried.

Reiki is the transfer of supposed healing energy through light touch or, in some cases, moving one’s hands over another person’s body. And reiki, for lack of a better word, is quackery. There is no scientific evidence to show it cures disease. There is anecdotal evidence that shows it can help some people with pain and anxiety associated with disease, but I’d venture to guess placebo effect may contribute at least somewhat to that finding.

Since reiki with both participants in the same room doesn’t seem to be effective, I have no idea how it would work when they’re in different countries. I think it’s safe to say it wouldn’t. I can say anecdotally, after my long distance reiki session many moons ago, I received no discernible improvement in my pain, my disease, or my mood.

I was asked, via email, how I was feeling after our session, a session I never even knew took place. “The same, but thank you so much for trying,” was my answer.

“Oh, you must have not been in the right frame of mind to receive it. Let’s try again.” I graciously declined the offer.

I’ve been offered lots of ‘help’ since I was diagnosed with a rare sarcoma in 2012. Vitamins. Essential oils. A mushroom tincture that made the tumor of a friend of a friend of a friend ‘completely go away.’ Links to news stories about obscure fruits that might show promising results against cancer in mice. Turmeric. Ginger. Books. Crystals. And, of course, good ‘ol reiki. The cures just keep coming.

I’ve had people suggest my negative thoughts are keeping me ill. The name of my blog, apparently, has the power to influence the growth of my tumor. And I chose poorly, so it seems. If I speak about this disease, I’ve made it my identity and it’s no wonder I won’t get well. If I don’t talk about it, I’m creating emotional toxicity from holding it all in and that’s why I must be sick. The theories never end.

I can’t say I’ve tried all of these suggestions. I have to be honest with you, I’ve only tried that one reiki session. So, I can’t even offer you anecdotal evidence of their effectiveness. I have to be honest again, and call me a pessimist if you must, but I think they would all be close to zero.

I know your ‘help’ comes from a place of love. I do. But, still, you need to stop. For one, your suggestions can be dangerous. Having a rare disease, I’ve been forced to become a bit of an expert on it. So, I know what helps and what hurts. I hate to break it to you, but a lot of what you tell me to try can actually hurt me, possibly accelerating the growth of harmful cells in my tumor.

I understand your cousin’s sister’s boyfriend’s mom cured her breast cancer naturally, but I don’t have breast cancer and your cousin’s sister’s boyfriend’s mom is probably a myth. Not to mention the fact that there are many type of breast cancers, all of which respond differently to to various treatments. Don’t send me or anyone else on a wild goose chase that may prevent us from seeking what is truly effective against our disease.

Secondly, you’re cruel to hand me false hope. I spent years trying treatments that have shown mild effectiveness against desmoid tumors. And each time my heart was broken. But at least I can say, there was some evidence to support its usage and, at the time, it was literally all we had.

I hate to be the bearer of bad news, but you’re not an expert in my disease, even if you read an article on the internet. And you have absolutely no business telling me or any other sick person about the latest fad cure. You’re not helping. You’re hurting. And you need to stop.

And your cruelty reaches epic levels when you tie the effectiveness of your ‘helpful’ suggestions to my state of mind. Should I have another recurrence, it won’t be because because my blog is called I’m Sick and So Are You. That reiki session didn’t fail because I wasn’t in the ‘right state of mind.’ Reiki didn’t work for me because, as the scientific evidence suggests, reiki doesn’t work.

There are many layers of guilt in my illness and they mostly have to do with all that my family has had to give up because of it. The weight of that is often unbearable and you suggesting I should be more happy or more open to your ‘help’ or that I should identify as well in order to not be sick, is a cinder block on my chest when I’m already gasping for air. I’m begging you to stop.

And lastly, your ‘help’ often arrives at the mere whisper of a complaint from me. If I’m in pain, you know how to fix it. If I’m broke from medical bills, you need to show me how to be better with money. I’m now your pet project, in need of fixing. It’s degrading.

I need to vent just like you do about your job or your kids or your spouse. We all need an accepting and open space, free of judgement, in which we can exhale. That didn’t change for me because I have a bunch of misbehaving cells in my body. If I need your advice, surely I’ll ask it. I know how to do that. If I don’t ask, just kindly keep your ‘help’ to yourself and let me breathe.

I will tell you about one other suggestion I tried that worked very well, an oral chemo recommended by my oncologist. After I asked her, of course. Nexavar has been shown, in a double blind study, to be most effective in stopping the progression of desmoid tumors. After three years with no tumor growth, I can say it’s been effective for me. I should note, my lousy attitude and overall negative demeanor seemed to have no bearing at all on how well it worked.

Even though this treatment is proving to be effective, the study has only very recently been completed. I still don’t know what this means for the chance of possible future recurrences. And always, this leg is a daily struggle. So I offer you this. If you hear me complain at any point forward, and I promise you will, the best way to help me is by not ‘helping’ me at all.

*Featured image by Sharon McCutcheon from Pixabay

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