The 3 words I hate the most since becoming chronically ill

“Have you tried?”

Without asking for permission first, these can even be cruel words.

To give you an idea, I’ve had people suggest everything to me from injecting myself with hemp oil to showers.

Yes, as in bathing.

Yes, I’ve had two people ask me if I’ve tried showering in really hot water, or alternating cold water and hot water.

So yeah. Those are the people I’m talking to right now. Or at least about.

It assumes a lot to think that a person who has been dealing with a potentially fatal illness hasn’t done their due diligence to make sure they can put death off as much as possible.

It assumes those of us with chronic illness haven’t been educated about our malady with any depth, when chances are, the study you’re talking about was conducted on US.

I’ve been chronically ill since 1998. I may know more about my various ailments and how to deal with having them all at the same time for

There are so many reasons why people choose the treatment they are on, from money to conflict with other treatments. This is intimate information that many people don’t want to discuss.

If you don’t know that person well online or aren’t friends offline? It isn’t appropriate for you to offer suggestions when people vent online or even if they blog.

Everyone has a right to keep certain things private, even if they vent on social media or write advice with people in their blog posts.

And yes, I know you have good intentions – some of you.

If your intentions are truly good, then you won’t mind some tips and perspective on what you’re doing.

To be fair, some people love getting tips and suggestions. I have a friend with chronic migraines who hasn’t quite embraced the #spoonie designation- she doesn’t mind advice. If memory serves, the reason is, she’s tired of looking.

Of course, I’m pretty sure she’s getting better suggestions than I am.

As in, she’s actually getting suggestions, while I’m getting veiled judgements.

And boy do I get people who are vicious with their judgement.

I get people who want to share that I’m probably cursed or brought it on myself. In 2018.

I get

Why don’t you want to try my super-awesome home remedy for cancer that I just invented in my backyard? I’m just trying to help you, Tinu.”

I get

My company that I just started as a network marketer has a new untested product that cured a person I’ve never met or investigated. I love you so much that I want you to buy this untested option with your limited financial resources.

I find it funny that with every single other issue revolving around  cancer or chronic illness, people treat me with kid gloves, and walk on eggshells.

Sometimes they leave and never come back.

But when you have some holistic treatment for cancer, you find the rudest, most hurtful way possible to introduce it to me.

Then you tell me that the plan I carefully took three months to come up with in coordination with my doctor will kill me on top of that.

Because I’m not going through enough shit already HAVING CANCER.

Just because I chose to tell my story in public to help people does not give you the right to treat me like dirt.

That’s not a thing.

Also, this is my life we’re talking about.

I didn’t just wake up one day, Google “how to stop having cancer” and just apply the first solution I found.

If you know me, even just the silver if the public me on social media, you know I don’t blindly trust even the most qualified doctors who went to the best schools.

And if you don’t know me, then why are you offering me unsolicited advice?

I’m my own health advocate.

I also have several other conditions you don’t know about that color my approach to my treatment.

There’s at least six health care professionals in my family.

Most of them are also doctors and at the top of their field. I’ve also had two family members who had cancer. Not that any of those things makes me an expert on the cancer I have.

But all of that does give me a better starting place than most people seem to expect a black woman to have.

And with that starting place?  I made myself an expert.

I went back and forth with my doctor over which treatment I would have.

I purposely chose the oncologist that I’m working with over several other doctors because she mixes vitamin therapy and other whole body approaches with western medicine.

She and I argued over whether my body could or should take a harsher, shorter treatment.

I don’t mean I disagreed with her.

I mean I was a pain in the ass and behaved like I was her colleague, not a patient.

In other words, a lot of thought went into my treatment option, like most cancer patients.

You shoving a solution on us without asking assumes a lot.

It insinuates that we are dumb losers who don’t know better than to just blindly trust whatever authority figure tells us what’s right or wrong.

Is there something not quite right with the fact that doctors get kickbacks for chemo in the US? Yes. But it’s by far not the only drug or treatment it happens with.

And there are a million other reasons why a person might choose one treatment over another.

But dude. Either I used to hold your hair back when you vomit or we’ve never met in person. So you can’t present yourself as an 11th hour expert.

Plus, what would you do if I agreed to your treatment idea and it killed me?

How do you know it doesn’t have the same kill rate as side effects from cancer?

If it’s all about corruption, why do state-run health care in other countries still also use chemo to treat cancer? When there’s no possible path to profit for those doctors.

If after all that, you still can’t resist telling me about the new network marketing company you’re a distributor for and its miracle cure (which of course you expect me to buy, rather than give me, you’re so concerned with my life?)

Then just ask.

Like everything else, just ask me. You ask when to come over, if I’m okay, do I need help?

So ask if I want your medical advice before you give it to me. 

Don’t just post stuff to my Facebook wall and tweet me links.

Pull me aside in private and ask me if I’d like to hear about this new diet/drug/home remedy/asparagus juice.

Worst I’ll say is “no. I’m locked into the choice I made and it’s working. My labs look great.”

And I probably will say no. But it’s better to ask me if I want advice and risk hearing no, instead of trying to shove something on me and risk that I’ll stop listening to anything you say, forever.

2 thoughts on “The 3 words I hate the most since becoming chronically ill

  1. Tinu – Is the condescension in these health ‘suggestions’ racially biased potentially in your view? I’m not sure why my gut is going there; but my initial (angst-ridden) concern is this: is there a working assumption in your view in these faux friends that an American-Nigerian woman would -not- have intellectual drive or sovereignty over her own course of healthcare? Or also a working assumption that an American-Nigerian woman would —not- have access to extremely educated medical, pro relatives like the surgeons and nurses in your family? How you tell truth expands my heart and wokeness all the time. Rev Dr Barber, Henri Nouwen, Ava Duvernay, Tinu Abayomi-Paul. Please say if I’m making too big or ill-directed assumption myself with this. It just doesn’t sit with me and wonder if race is a bias in these ‘friends.’ Do you see story-patterns from others too in the spoonie community?

    • Hi Jill!

      Sometimes I would guess that race is a factor, even gender or nationality. There are peoole who assume I’d use a faith-based solution, or that I’m uneducated, unintelligent, didn’t grow up privileged.

      And no it’s not a big assumption. I just honestly didn’t stop to process it. Some days racism is like really annoying background noise that I’m struggling not to notice. Not who I was mad at – various people have pissed me off about this recently.

      Where the racial bias is really Stark is in being treated. That I hear about in the Spoonie community much more. I suspect that this topic is hard to talk about when your illness has already played a part in isolating you.

      I have a bit of a privilege cushion when it comes to that.

      Thanks for asking such a probing question.

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