so much to say

Which medicines to take—and whether to take them—is definitely a pressure I’ve felt as a person with two chronic illnesses: psoriasis and psoriatic arthritis.

Sometimes those pressuring me to take fewer pills and injections may have good intentions: take more vitamins, eat fewer nightshade vegetables, exercise more or differently, take XYZ miracle cure.

While I appreciate the (I hope) kindly sentiment behind those and other suggestions, I find the implications behind people’s repeated suggestions that I manage my diseases differently a little offensive, as if I don’t know what I’m doing. I have done the research into my treatment. I have looked into alternative and natural solutions, and I incorporate a mix of modern medicine and natural options. As I’ve mentioned before, I became a vegetarian in an attempt to help my symptoms; despite what some people think, I don’t eat pork, beef, poultry or seafood, and I’m working to cut out as much dairy and egg as possible, except if I know the source (i.e. I pick it up at my local farmer’s market and I can ask the farmer who produced it how he made it).

But my decision to do this was based on my own research, my own experiences. It was a decision that I made and was supported by my doctor and nurse practitioner. As it turned out, it was the right decision for me and has helped alleviate some of my symptoms; it certainly is not a cure and I would be insane to get off the drugs I’m on.

I think the ideas espoused by Dr. Lee are dangerous.

To wit:

JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time.

Oriental philosophy traces these negative responses to the child’s conception and gestation. It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences.
Stress, anger, medications, vaccinations, emotional problems, drinking and drugs all affect the child throughout conception and gestation. These factors cause the parent’s energy to be imbalanced and it is passed along to the baby, which presents itself as a weakness of some sort after the baby is born.
This is one of two philosophies behind all infantile or early-childhood diseases. The other stems from environmental problems, such as radiation from electricity, poisons or pollution in the environment and household, toxins in food, and poor nutrition.
The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection.

Telling people JRA is “usually temporary” is setting them up to blame themselves when their child—shockingly—does not get well with massage, good eats and love. Auto-immune arthritis is not the result of my parents’ bad energy or stress; it’s not their fault because they would not have wished it on me had it been in their power to prevent it.

This article is taking the nosy, think-they-know-better-than attitude that I’ve experienced from family and friends and people I barely know to the extreme. If massage, affection and herbs were enough to make me feel normal, I wouldn’t be taking multiple potential toxic drugs.

What would I like to say to all the people out there who think they know better than I do or my doctors do? What I would like to say is neither politick nor productive. So, what I’ll say is this: You are entitled to your opinion as to what you think is the cause of my disease and what you think the best treatment would be. But until you’ve lived it the way I have, until you have felt the pain and exhaustion and fear, until you’ve felt the relief brought by these dangerous drugs and experience the indecision as to whether you should go on them or stay on them, your, perhaps well-meaning, advice is not worth much. Modern medicine—yes, the methotrexate, the ENBREL, the Plaquenil, the etodolac—is the only thing that allows me to get up every morning, to get dressed, to go to work, to be a good wife, to walk my dog, to do everything I do. Without them, without the right combination of them, I am in intense pain, I’m stiff, I can’t focus or remember the sentence I started just a few words ago. Without the meds, I would not be able to hold down a job, to be a productive member of society.

Yes, I do other non-medicinal things to increase my overall health: I’m a vegetarian, I do yoga. I am open to adding other things to my regimen, to my arsenal. And doing most or all nutrition or acupuncture or herbs works for you, that is wonderful. But it doesn’t work enough for me to cut out the drugs that allow me to function.

So, I guess that’s the biggest thing I would want the people who expound on their chosen “cure” to know is this: What works for one person won’t necessarily work for someone else. And what works for one person won’t necessarily keep working for her. Those of us with chronic illness have to be willing to try almost everything; but recommending the equivalent of a Band-Aid or sugar water for our very real problems doesn’t help. If you really want to help, stop talking and start listening.

10 thoughts on “so much to say

  1. A to the MEN.

    This post made me cry. I am SO THERE with you, this week more than ever after a particularly vicious attack from a family member trying to sell me another miracle supplement to cure me.

    Keep that attitude. Keep educating the people around you. I’ll do the same. And maybe we can start to change the world from our two corners.

  2. From the mother of a daughter battling a chronic illness for almost 20 years – we hear you and applaud you. I cried when I read this. I have personally fought off so many well meaning people with pills and concoctions and diets that they really believe will work for her. My response was usually – if you are absolutely convinced that it’ll work, then why not pay for 3 months worth and we’ll see. If you’re right, we’ll keep buying. But so many people don’t take the time to know what my daughter is dealing with and just don’t get that it takes more than sugar pills to keep her moving and able to do life.

  3. You wrote how I felt and still do feel. I am tired of hearing the words “have you tried this?” Thanks for voicing it. When my friends make comments I try to perceive the good in their words. I also remind myself they don’t know and I would never want them to experience the pain of psoriatic arthritis. Telling someone how to deal with their pain without knowing or experiencing it is like a childless couple telling parents how to raise a child. It doesn’t make any sense.

  4. Oo this kind of thing makes me FURIOUS. So furious I have to use all caps.

    I’ve heard a lot of this kind of thing from “well intentioned” friends and family members, and I’m sure my parents did, too, when I was a child. I was diagnosed at two, and I remember waiting impatiently for my 13th birthday because some idiot had told me JRA went away by the time you hit your teens. I was so disappointed when it didn’t. Since then, I’ve heard all kinds of things – I’m sick because my mother gave me milk, I’m sick because I’m stressed, etc. I wish people would stop opining on things about which they know nothing.

    Thanks for this post. It’s good to be reminded that we all have a responsibility to tell the truth about illness.

  5. Hey guys:
    Thanks for all your kind words! I didn’t realise I had so much to say on the subject when I read about Kelly’s carnival topic, but all of this kind of just came spilling out. It’s sad and frustrating that we all have to deal with so many armchair rheumatologists thinking they know what’s best for us.

  6. Pingback: Resistance to Rheumatology Treatment: Blog Carnival #3 | Don't miss this! | Rheumatoid Arthritis Warrior

  7. Hi Nessie, thanks for posting. I can understand how you feel & the frustration that comes with the predicament. I do self experiment and as a chemist with over 20 years experience in R&D, maybe I can make an improvement, difference. I’ve been battling with this “immune system” monster for over 5 years now and it has not been easy. I’m still on “heavy medication” but it is going well, currently on a reduction course.
    Breakthroughs often happen unexpectedly, Flemings penicillin discovery is a classic example.

    I agree with you that “What works for one person won’t necessarily work for someone else” but there will be common ground and I think this is could be a vital source of information. I also think it is important to share information and “why or how” something may work, help and rejecting what doesn’t, not “flogging a dead horse”. Perhaps we should just leave it all to the “experts”, but are they doing a good enough job on their own?

  8. Great post! My husband takes Humira, and it allows him to continue working. I like how you mentioned “what works for one person won’t necessarily keep working for her.”

  9. Pingback: year in review « lipstick, perfume and too many pills

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