If I Wanted Your Advice, I’d Ask for It

If I Wanted Your Advice, I’d Ask for It

The thing about being so open about my lupus on social media is that people often attempt to force their advice on me. While I understand that, for the most part, it’s incredibly well-intended, please understand that although I’m speaking out I’m actually not asking for your opinion on how to miraculously cure my chronic illness.

I remember the first time I posted about my lupus diagnosis on my Facebook profile. A tsunami of love was sent my way, as so many of my friends and family wrote beautiful messages of support and encouragement. But among them was a comment I hadn’t expected, the type of comment I’ve grown to resent.

It was from an old acquaintance encouraging me to look into an alternative diet, as she claimed it had previously been “proven” to cure autoimmune diseases. And, while the intentions behind it were obviously nothing but good, I found myself pretty angry about it.

Angry because I’m under the care of specialists, doctors who have spent a large part of their careers — if not their entire careers — dedicated to working with people like me. And yet somehow the advice of a nutritionist is apparently going to cure me.

Do I believe that a well-balanced, healthy diet is crucial to any life? Absolutely! Do I believe that dietary changes have helped many lupus warriors lessen the severity or frequency of their flares? Yes. But do I believe that by simply changing what I eat I’ll be able to completely cure myself of one of the mysteries that even medical science struggles to understand? No, I’m sorry, I just don’t buy that.

From the outside, it may seem like finding a cure could be simple. But nothing about lupus is ever simple. If I thought there was a way of treating myself with something other than handfuls of medication daily, I’d be all over it! I hate pumping my body full of drugs. I’m well aware there are some truly terrible consequences of taking some of my medications long-term, and if I had any sound alternatives, I’d definitely have given them a whirl. However, because anti-autoimmune disease magic beans do not exist, I’m without many options.

When I speak out about my life with a chronic illness my intent is to raise awareness among those around me; I’m not looking for theories or suggestions about how to cure my disease. Rightly or wrongly, I place my trust, my health, and my life in the hands of the doctors who oversee my treatment. Above anybody else, I trust their judgment, as it’s their area of expertise!

I’m not saying that all patients should afford their doctors unwavering trust by default, but in my case I have. Without treatment over the last 18 months, I wouldn’t still have two healthy and fully functioning kidneys. And though I’m fully aware it’s not nearly perfect, there’s the knowledge that without medicine the disease inside of me could’ve proven to be fatal.

Unless you’re living with it, have a loved one affected by it, or are a professional treating it, I’m sorry to say that I doubt you can properly comprehend the complexity of lupus. And, with all due respect, if I wanted your advice on my illness, I’d ask for it.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

7 comments

  1. SAMI says:

    Seriously? Clearly you are a very bright person who understands that by sharing your experiences on social media it will beget well intentioned suggestion (and not so). Be grateful that people care enough about you to make suggestions and encourage you. I live with Lupus and it’s secondary illness everyday so I am well qualified to respond to your post. Yes, I have dealt with many suggestions, many unconventional and out of the perview of my army of physicians, I have graciously listened to each and every one of them. But never have I taken to social media to call out well intentioned suggestions. Caveat… if you post something you should expect a response, good, bad or indifferent. Be grateful that in your quest to educate you are encouraging an ongoing discussion and awareness of this dreaded illness. You can’t be so thin skinned, you have a battle ahead of you. Hell, I fight the good fight everyday, some days are good others not so good. As we say in the Bronx… GET OVER IT!!! One person’s comments cannot be so pogneint that it would prompt such a response, take what’s good and leave what you feel is junk behind. Peace!!!

    • Kristiana Page says:

      Hey Sami!

      I think that’s a rather unfavourable reading of my piece, and thought I may not agree with your perspective, I nonetheless appreciate your response and can understand it. As a fellow lupus warrior you should be aware that there’s no possible way of living with this illness with a thin skin, I’m grateful often and for much, and I fight this battle just as hard as everyone else does! The thing is that this space is an expression of my journey and experience with lupus, and I am entitled to express my feelings on a matter – just as you have, by expressing a passionate and obvious dislike of my piece. Not all of my feelings or opinions are going to popular and that’s more than okay, I’m very accepting of that. However, the fact that you disagree with me doesn’t mean that my feelings don’t resonate with others in the community. If I want to be mad or frustrated about something, I’m more than allowed to be and I am also allowed to express it in my own column 🙂

      Kristi x

  2. SAMI says:

    Wow! It seems that you may have misinterpreted my post, and I misunderstood the “comment” section as an invitation to participate in a dialogue with a fellow Luppie I will leave you to your blog and your right to express your anger and frustration. No need to worry about me (or anyone else) for that matter expressing their opinion on your blog.

    • Kristiana Page says:

      Words alone often leave a room for interpretation that can be misconstrued and lead to offence that wasn’t intended, which is what I feel has happened here unfortunately.. It appears that somewhere along the line we both may have missed each others points, for my misinterpretation I sincerely do apologise 🙂 As I have clearly misread your post, I would’ve liked the chance to talk it through further in order to properly understand what you meant, but I’ll leave that up to you 🙂 Please know it was never my intention is never to discourage you – or anyone else – from commenting on my columns. Though it didn’t come through previously, your reply did prompt some self-reflection on my piece which I have analysed and taken to heart, as any writer should. As wonderful as the internet can be, it’s misunderstandings like these that highlight just how much can get lost through text alone. I encourage you to comment again in the future, should you ever feel like it!

      Kristi x

  3. SAMI says:

    It was never my intention to offend, please accept my apology. My intention was to offer support. In retrospect I can see how my words could have been misconstrued. I guess it’s a product of being a New Yorker.

    I had a co-worker who believed that she could “cure” me of my Lupus by following her diet. Yes indeed it is infuriating when people over impose their good intentions. What I meant to say is this, take the good stuff and toss out the junk. No one knows and sympathise with you more than a fellow Luppie. It’s a horrible illness, we look fine on the outside but our blood work and failing organs tell a different story.

    I have enjoyed your posts, but this one provoked me to respond, a credit to your writing skills. A writer who can stimulate a response from her audience is indeed a good writer. What you do takes a lot of guts, writing about something very personal. Heck… I may even give it a try.

  4. Christine M says:

    A prominent Rheumatologist who suffers from autoimmune disease is NOW conducting clinical trials on the diet that transformed her from a wheel chair semi-invalid to a functioning doctor and hiker again. She is a qualified professional.
    I thought it was safe to post and share with other Lupus patients. After reading your angry response ; I will be VERY careful what I post and to whom.
    Thanks for the warning.

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