Sunday, September 16, 2012

Article: Let the Buyer Beware

An article I linked to in my last post, definitely worth reading, describing how to differentiate between valid claims and scams in health products aimed towards the chronically ill.

How NOT to Help: Marketing MLM Products Towards those with Chronic Illness

If you are like the average person, myself included, chances are you've at some point tried joining a Multi-Level Marketing organization. I think this is probably even MORE likely amongst those of us with chronic illness, because most of us are at some point forced to either take time off or leave our jobs & careers altogether.

For me, personally, it never worked out, probably because of the fact that due to my illness, I've become pretty socially isolated, and marketing online just didn't work as well as I'd hoped.

Still, this is not what turned me off from MLMs.

What turned me off were two different things:

1. The questionable ethics of marketing aimed towards the chronically ill


2. Family members and friends treating me like a target for sales rather than someone with whom they had a personal relationship with.

My first negative experience was before I even tried any of the MLMs myself. I'd signed up for some kind of Legal HMO-type network, where I paid something like $35 and had 24 hour access to a network of lawyers if I should ever need any legal advice. I think it was a 3 month trial, and then charged monthly, and also gave you the choice to sell to your own pyramid of people. So what happened, is when I didn't renew after the trial (I had just been diagnosed with FM and was not working and having a hard time financially) I guess my friend's commission became endangered. Suddenly, the guy, who had seemed really sweet, a very nice person, got crazy on me, saying I was being negative, that this is why I was broke, all kinds of awful personal attacks. All because I wouldn't keep paying for his product. It completely took me aback. Needless to say, I stopped talking to this "friend". Strike 1 for the MLMs!

Next, I tried one myself, a company selling "chemically safe" products, everything from Mineral Makeup, to Toothpaste, to Supplements. It was slightly aimed towards people with FM, but it wasn't necessary, and they actually did claim to donate part of the profits to and FM Research organization (which later turned out to be questionable, but that's a whole other story). I was sure my family would be excited to help, and played that up, but I don't think I ever got even one sale from any of them, so down went that idea... I think over a 2 year period I at least managed to make back what I put into it, so it wasn't a total loss.

During this time though, is when I began to see how the Internet was being used to market products, especially MLM products, specifically towards people with chronic illnesses, ESPECIALLY Fibromyalgia. I did a lot of research, talked to a lot of people, and rarely did any of these products have lasting effects, if they had any at all...sometimes people would get really into something and claim they were "cured" by it, and become a distributor themselves, giving glowing testimonials, but I found that some of these were actually frauds, and some, were just caught up in the MLM machine. Maybe it did seem to help at first, but it rarely made a huge difference in the long term. As time went on, I found the amount of advertising being directed at people, especially with FM, was astonishing, to the point where it made me mad. (These products were almost ALWAYS ridiculously overpriced. Sometimes they were even e-books, which varied in price, promising "the answer" to recovering from FM, which on further investigation, would turn out to be information that could be found for free using your favorite search engine! Example:

So like most people with chronic illness who spend a lot of time online, I became very wary of any "miracle cure". (Read: Let the Buyer Beware )
And I know I'm not the only one; if you just do a search for "miracle cure" and "Fibromyalgia" you will find various memes out there that include a top 10 or 5 list of "Things NOT to say or do" to your friends with FM or CFS and so on, one is ALWAYS about not boring us with the details of that "new treatment, cure, herb, juice, mushroom, etc.. Because really, we are over it. Those of us who are into researching treatments know which treatments we want to try, and they pretty much NEVER include MLM products. (Although I admit, I did try one at the beginning, my friend's Mom who had FM suggested it to me because it helped her, so she sent me the first one for free, and it did help a little, so she would sell it to me at cost, but eventually it was just too expensive to be worth it.)

My second really negative experience came when a family member tried to recruit me to another MLM organization. By this time, I had been sick for years, and was literally just scraping by so that buying TP from the 99 Cents store was a major victory, and keeping a roof over my head a major challenge. So this family member comes to me on the pretense that they want to help me out. I think this time, telling them I didn't have any money was enough. I was actually disappointed because they seemed so excited & I wanted to help, and would kill to be helped, but with no money, they lost interest, although, first making me feel like I was really missing out!

So a couple of years later, the same person comes along, not sure if it was the same or a different deal. But when I start asking for details, they clam up and want me to come to meeting. But see, by this time, I know how those meetings work. They tell you just enough to keep you hanging, get you all hyped up, and then towards the end, they drop the bomb about how much you have to pay to sign up.

At this point, I'm wayyyy sicker. I couldn't even manage sitting in class at school, and had pushed myself so hard and had cognitive problems so bad, I could barely talk on the phone clearly without any awkwardness.

But here is my family member, and they keep saying how they want to help me. I keep informing them I don't have any money, but they insist, so I figure, well, it's my relative, why would they make me jump through all these hoops if it was hopeless, right?
Only instead of acting like someone I'd known since I was in diapers, they suddenly became a professional salesperson, which I can't stand. I know all the right questions to ask, and they are bobbing and weaving, and trying to get me to go to that darned meeting. I ask to have lunch w/them instead to discuss it, but remind them I have no money. While waiting to hear back, I do some research, and find out it costs $3,000 TO JOIN!!!!!!!!!! This in turn leaves me feeling confused, and hurt. I feel like my family member is treating me like a mark. Either that, or they think I'm lying when I say I'm broke. (Which feeds into my insecurities, making me wonder if my family has been so absent when I've needed them because they don't know what I'm going through, so maybe I should be clearer? But that's another story, and now I understand that A. The average person doesn't mean it when they say they're broke, so when you say you're broke and mean it, people don't understand that. and B. People nowadays are just too busy leading their own lives to care if stuck in bed for two months and need help.) That family member and I no longer speak. (Not even my choice, I was hurt, but I'm not THAT unforgiving.)

From this point on, I smell MLM, and it practically strikes fear in my heart. No, I'm just kidding, it's not that bad. I'll gladly buy Avon when I can afford to splurge a few bucks (and yes, by a few bucks I mean like, $5-6, lol). I have one friend who frequently signs up for new MLMs, but is very nice about it and has never made me feel bad. A former roommate did get pissy when I turned down her Mona Vie juice MLM though, so I've had both experiences. But I'm definitely wary, because I've seen what it does to people. I just never imagined lightening would strike twice.

Which is what brings me to this topic. I had another sad experience with a family member trying to sell me a product, and this time, worse, aimed at me because of my illness, and even worse, it was someone I admired, looked up to, and never, ever would have expected this from.

They first approached me a few months back, which granted, was really bad timing, because I was so overwhelmed with family problems and my own problems that I was as close as I've ever been to a nervous breakdown, I literally felt like I was my sanity was a tattered map I was willing to hold together on a daily basis, so it couldn't have come at a worse time. The person kept going on  & on about it based on it on the premise that it would help my health problems. I even pointed out that it had an ingredient I couldn't tolerate because of my IC, but did that stop them? Nope! I imagine a superior was consulted and she came back with a testimonial from a friend of a friend who had IC as well and was practically cured or something to that effect. It kept going on like this. I started to wonder if maybe I should try it. (At this point, I thought the first bottle was free, because I'd seen that on someone else's site during my research, and this was good, because, I am definitely broke, at this point, all my supplements were funded by my Mom, bless her for that.) So finally I gave in and said, send me a bottle. But it wasn't free, so I said, okay, some other time, and I think I still had to be firm about that, and explain, as I had to my last relative, that when I said broke, I meant broke. Shockingly, since I had opened up to this person, they claimed to have NO idea that things were so tough for me. Finally they let up. Mostly. Still, this left a bad taste in my mouth, and I felt hurt and annoyed and a little angry because, again, I'd felt like a family member was treating me like a target for a sale, worse, under the guise of wanting to help me get better. I licked my wounds, and tried to get over it, but it took me months, really, to see that person the same way, and convince myself that I needed to not take it so personally, that maybe it was more about me than them, after all they had a great, busy life, family, vacation homes, friends, I couldn't expect them to dwell on my problems.

So I finally thought I had put it to rest, convinced myself that that person hadn't meant any harm. And then the very next week, WHAM! Here we go again! More advertising coming my way. This time, a friend who had FM apparently now had no trouble getting out of bed, AND no more stiffness! I tried to ignore, but no, then I got the full-on sales pitch again. Nope, actually in worse financial straits now, can't afford it. Would I like to become a distributor then? I could sell to my friends w/FM! A built-in audience! (Very subtly though, but it had also been suggested as an idea for me to another family member, so it was pretty obvious.) This time I was MAD, so I decided to remind them I wasn't okay with recommending products I didn't know for myself worked because of the problems I'd seen with people with these illnesses being targeted. For that, next, I got an offer to tour the factory. As if I could probably even manage that! I'm getting tired of making excuses that aren't being heard, so I try to be more firm, and more blunt. And all hell breaks loose. I almost can't believe this is happening, and as always, I begin to question objectively if I was being fair, and I feel confused, and end up feeling like I did something wrong, so I try to make nice. But they're not having it, because they are RIGHT, I am WRONG, how dare I  say how they are making me feel that they just want to make a sale and that I'm not comfortable with selling to sick people...I am a negative person, I thrive on drama, and I am closing the doors of opportunity.

All because I'm choosing to pay part of my electiricty bill instead of buying a product that will improve my health from my relative who just told me they made $1000 selling the stuff w/practically no effort, takes ski and beach rental vacations every year, but can't possibly afford to send it to me even though they are sure it is going to make my life so much better, which is all they want for me, golly-gee-whiz! And it's not about making a sale. It's about wanting to make people's lives, MY life better.

I feel like I'm in the Twilight Zone. I'm sad. And disappointed. And confused. I keep replaying it all out in my head, because I really can't believe it, but I really don't know what I could have done, except maybe just ignored the person, which is still uncomfortable and would still have led me to the same sad conclusion. Bought the darn product? No, I like electricity, kind of need it, especially in this heat! Maybe I could have been a bit more delicate, but my patience had been worn thin, and while I tried to dance around the subject politely before, once my temper kicks me past that, I get blunt. I thought maybe this would make the person realize they were taking things too far, that the sale had perhaps become more important than our relationship, I even offered to help, as long as it didn't involve aiming it at sick people, because I felt strongly that was not ethical, but that's not how it turned out.

This article I found about the dark side of MLM pretty much hits it right on the head if you look under the heading "IV. Relationship Issues: An Experiential Problem", "Never Admit You Are Wrong", "Counting the Cost: The First Church of MLM" and "Disease Alert: Beware of MLM Blindess". It describes the behavior and mindset of all the people who I've had bad MLM encounters with:

"Many readers will share the experience of observing MLMs divide families, friends, churches, and civic groups. Lifelong friends are now "prospects." The neighborhood is now "a market." Motives change, suspicions rise, divisions form. The question is begged: "Is it worth it?"

"Apparently, it is difficult for gung-ho MLMers to see how they look from the outside. They can watch lifelong friendships unravel, churches and civic groups poisoned, the avoidance of friends and family, etc., and never see that MLM was the cause.
If you try to point this pathology out, you are treated as if you have attacked the very gospel! Perhaps for some, the MLM approach is a new gospel?"

So I know it's not just me.

Have you had similar MLM experiences?
 Do you feel the same about people marketing to people with chronic illnesses, offering "miracle cure" type products?

Could there possibly be some reason I'm not seeing for this person wanting me to sell me this product so badly besides wanting to make a sale? Maybe I'm even looking for a reason I'm wrong, so I can apologize, because I'm pretty sure they are never going to...

Saturday, September 15, 2012

It's Invisible Illness Week

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: In order of Severity: Myalgic Encephalomyelitis, Dysautonomia (POTS), IBS, Depression, Interstitial Cystitis, Fibromyalgia, Endometriosis, Degenerative Disc Disease, among others that are not worth mentioning.
2. I was diagnosed with it in the year: 2002 for Fibromyalgia, 2006 Endometriosis, 2008 w/CFS/ME, 2010 for Interstitial Cystitis
3. But I had symptoms since:  2001 is when the pain first started becoming troublesome 2002 when it became a real problem, and constant, for awhile. It's suspected I contracted CFS/ME due to food poisoning in 2002 as well. Depression, since I was 13.
4. The biggest adjustment I’ve had to make is: Learning not to buy into the feeling that I'm worthless in American Society if I don't work, accepting that I can no longer do "anything if I really want to", learning to ask for help. Learning to try and let it roll of me that people might think I'm lazy, a pill popper, prissy, a weakling...It still smarts, no matter how hard I try. And I miss being a bit of a tomboy!
5. Most people assume: I’m healthy and capable of normal activities; they have no idea I can only keep up the facade for a few hours under good circumstances. 
6. The hardest part about mornings are: Waking up and staying that way long enough to prop myself up so I don't drift back off and my heart has time to adjust, and those first steps when my feet hurt.
7. My favorite medical TV show is: House. I wish I had a doctor like him!
8. A gadget I couldn’t live without is: My laptop, cuz between my back/neck problems & POTS, I can no longer sit at a regular computer for long, my laptop lets me lean back, even lie down & helps keep me entertained & informed. :)
9. The hardest part about nights are:  Going to bed when it seemingly took all day to finally feel okay, knowing I have to start all over again the next morning.
10. Each day I take about 6 pills & a host of supplements.
11. Regarding alternative treatments I: have been priceless for getting my FM & DDD pain under control, as well as spiritually; I just wish I could afford them these days!
12. If I had to choose between an invisible illness or visible I would choose: A visible illness, for sure. I'd gladly give an arm or leg if I could feel and function otherwise normally!
13. Regarding working and career: I’ve had to give up on that for now, I wouldn't before and it made me wayyy sicker. It was very frustrating because I had just gotten to the point where I could make a livable wage. I hope someday to get well enough to go back to school, maybe become a librarian, a nice quiet desk job. Giving up my last "real" part-time job though, was one of the most devastating things I've ever had to face.
14. People would be surprised to know: that I'm usually upbeat, in person, lol!
15. The hardest thing to accept about my new reality has been: being broke, learning my limits (still learning) facing my limitations, fighting the feeling that I'm letting people down or not trying hard enough.
16. Something I never thought I could do with my illness that I did was: Accept that so many things are out of my control. (Still working on it!)
17. The commercials about my illness: are misleading, because they seem to give people the impression it works for everyone, doesn't mention all side effects, and will make us all better. They also had a ridiculous amount of trouble pronouncing FIBROMYALGIA.
18. Something I really miss doing since I was diagnosed is: going to concerts, having a normal life, working, having a plan and goals, being able to buy cute clothes!
19. It was really hard to have to give up: having an active social life, going to concerts, partying like a rockstar. My friends when I had to move in with my Dad. Hardest of all was Working!
20. A new hobby I have taken up since my diagnosis is: Blogging.
21. If I could have one day of feeling normal again I would: I really don't know...maybe I'm greedy, but one day just doesn't seem like enough, lol, and for things to be really normal, I'd have to go back in time!
22. My illness has taught me: to ask for help when I need it.  I was never good at that before and I still find it hard now.
23. Want to know a secret? One thing people say that gets under my skin is: When they play the one-up game, or belittle my pain. Or worse, when they try and sell me "miracle cures", especially if they are family and seem more interested in making a sale than in our relationship.
24. But I love it when people: Ask if there's anything they can do to help, or just come visit.
25. My favorite motto, scripture, quote that gets me through tough times is: I should probably get one of those!
26. When someone is diagnosed I’d like to tell them: It's VERY hard work, but you CAN get things under control, or at least improve the pain. For the rest, promising new treatments are on the horizon. Keep your family or friends close, because you will need a support system, but remember that most of all it's up to YOU!
27. Something that has surprised me about living with an illness is: that I've made it through so many seemingly impossible times and can still find rays of hope here & there. And people and their random acts of kindness!
28. The nicest thing someone did for me when I wasn’t feeling well was: My friend came over with her daughter and helped me vaccuum, put away laundry, and do dishes. I was seriously over the moon! It makes life so much easier when you're sick, does wonders for your outlook to not have to look at the mess and feel the despair, and just fills me with awe to feel that people could be so kind.
29. I’m involved with Invisible Illness Week because: I have a host of invisible illnesses, and I hate that I and so many people are suffering and so little is being done to help. I hope that one day many of these under-recognized illnesses will be as well known as Cancer and AIDS, because they cause just as much suffering. At least one doctor has said they would choose AIDS over CFS/ME.
30. The fact that you read this list makes me feel: loved and supported, and like I am succeeding at something. So please feel free to comment so I know you read!
To list your 30 things, click here.