Friday, October 5, 2012

Are Cancer Patients This Mean To Each Other?

People use The Fibromyalgia Fun House on facebook to ask questions pertaining to living and coping with Fibromyalgia in order to gain a cross section of answers. It's become a great source of information from people who actually live with the illness and thrills me to see so many coming together to offer support, encouragement and information to each other. Well the other day I had a question. Silly me, I don't know what came over me, but I guess I thought I had the right to ask it seeing as it's my page and all. I was hard at work updating The Fibromyalgia Crusade website and wanted to hear from patients who tried the "wellness" approach to managing Fibromyalgia, combined with modern medicine, and had absolutely no results or lessening of symptoms. By changing my life in a million different ways I was able to get out of the hell of unmanaged Fibro and recover a decent quality of life. But I know what works for one does not work for all and I wanted to hear from the patients who tried, but it didn't help. 

So I posted the question. Came back a few hours later to look at the responses and almost spit my chips over one of the comments. An individual wanted to know why I was asking. They told me how terrible I was for trying to sell a "miracle cure" for Fibromyalgia. Blowing smoke up their asses, I believe was the phrasing used. I was shocked to say the least. Miracle cure? What on earth was this person talking about? As I continued to read the annihilation of my character their motives didn't become any clearer. By the end of the comment this person had chewed me up and spit me out. Told me I was terribly selfish for trying to make a buck selling poor sick people a false cure. Judge, jury and executioner, I had been tried, convicted and hung in the court of this person's comment. But I was still very confused. I didn't mention a product, just asked a question. I never tried to sell anything, other than awareness bands and t-shirts, which according to my understanding of the laws of physics couldn't be construed as a miracle cure. Could it? I was very glad I wasn't in a sensitive mood or I might have taken this ridiculous tirade personally.

But this experience reminded me of one of my most shocking discoveries when I became active in the community, the utter lack of respect many patients have for other patients. It made me wonder if people with other illnesses are this mean to each other too? Does one cancer patient get mad at another because they have a different type of cancer? Or are in different stages at the point of diagnosis? If chemo or radiation works for one patient are they chastised and harangued by those it does not work for? What if someone catches it early enough, has it surgically removed and is cancer free? Are they told they didn't "really have cancer"? If they do all the treatments and do not recover, are they then told they didn't try hard enough? What about the patients who decide to include a wellness approach to their treatment, does a certain sector of the patient body declare them public enemy number one? I can only assume there are far more "miracle cures" out there for cancer than Fibromyalgia. For crying out loud it's a terminal illness! We are not the only ones people try to make a fast buck off of in our time of need. But just because this faction exists in the world does that give patients the right to treat each other with unprovoked disdain and hostility? I don't think so. I have a very hard time imagining a bevy of catfights erupting at a breast cancer walk because not every patient has the exact same experience or responds in the exact same way. 

I believe we will get so much further together than apart. We struggle to be taken seriously, not dismissed as depressed or told we are exaggerating a few muscle aches and sleepless nights. Massive differences exist in the patient body. Some are disabled, others work full time. Some got the flu and were left with Fibro, others have five other ailments in addition to Fibro. Not a one size fits all illness here folks! It is with perseverance and unity we will see a change in the way society reacts to our reality. It is with respect towards other patients we can learn and grow to figure out how to make Fibro fit around our lives, not our lives fit around Fibro. And it is with compassion toward others we can find the greatest respect for ourselves.  

Thanks for joining,


  1. I agree with you- we need to stand together; I think the resistence and "finger pointing" comes from the experience one has in obtaining and living with this diagosis of fibromyalgia. The individual has had to fight for legitimacy, it's hard not to get defensive. Other illnesses either have a standard test to find them or standard protocols to treat them; fibromyalgia has neither

  2. Leah,
    Only you could turn a mean spirited comment and turn it into a lesson.
    Keep on doing what you do and thanks again!

    Diana Cowan

  3. I have fibro and find a very mixed group that I could not really call a community. I often feel a lack of support from others who have fibro and some times find they take me the wrong way?? I also believe, like you that we will get so much further together than apart and love your post. It needed to be said.

  4. The local support group atmosphere was rather hostile and possessive when I moved to Tucson almost three years ago. I didn't understand it then, and I don't understand it now.

    I do know that there are people with Fibro who regularly search through the web, looking for people who are selling "cures" or "badmouthing" the disease. I don't know why they do it, but they do. Just like there are people who shop support groups (especially if they seem to enjoy a good pity party, it seems), it seems to find a shoulder to cry into. I don't really know why they do this either, but they do. I know we've all had moments when we've been so frustrated that we just want to hide from the world and cry, but it seems like it's a lot more productive to pick yourself up and move on with your life than stay in a "poor me" mindset!

    We have a weird illness, but it doesn't excuse rude or thoughtless behavior. I saw that comment and chose not to respond to it, because the woman who posted that comment obviously didn't know where she was or what she was doing.

    I ended up writing a blog post for the support group I run later that evening that covered a lot of the same ground. I suppose these are things that the collective "we" should be discussing, since it seems to surface again and again.

  5. I've seen this same type of behavior. And if you are able to be more active than someone else (read: feel better) by golly you will be told what a failure you are at having this illness because you don't "need" narcotics. It's almost a contest on who can show they are the sickest with the most symptoms. I don't think that's a good contest to get into myself.

    I'm sorry someone judged your character over a simple question. It hurts to be judged so harshly.

  6. I guess I'm lucky. I haven't seen or been on the receiving end of that kind of behavior. You have put yourself out there. I have only been blogging for a short time. I suppose it could happen to me to. I am getting ready to monetize my blog if I get accepted. I cannot work outside the home, because of my several illnesses, including Fibromyalgia and Chronic Fatigue Syndrome. I'm so sorry you went through the ugly comments, but you have handled it well.

  7. Making an assumption like that really makes that person look like the idiot hon. Not you. That person probably went back and re-read your question and may have come to realize they took it the wrong way. And if not, well, my above statement is still the truth.

    Though I do note you do sell things on your crusade site, none of it seems to be declaring any kind of cure lol.

    I have personally found that wherever I go online, there is more support than nasty comments when it comes to Fibromyalgia. Then again, I stay away from the "support" forums and Facebook groups. In my experience, those are the places you find way too many pity party types. The kinds that only want to talk about themselves and have no real time for anyone else. Of course not everyone is like that, but too many for me :) I just avoid such places.

  8. The only people who've been "mean" to me are my family! What is the wellness approach? Is there a link to a blog about it or a book? I'm open to try most anything!

    blessed be, Mary

    1. Mary check out The Fibromyalgia Crusade. I laid out everything I learned and did there. It can take a long time to get results but I am not in agony every second anymore and actually enjoy my life again. Hang in there!

  9. I saw that comment the other day and wondered what the hell she was talking about. I answered the question as asked and ignored that person as it was not the time or the place to try and have some sort of dialog since it had nothing to do with the question you asked. Keep on keeping on! You are doing a great job and I enjoy reading all the responses to your questions (and answering if I can). We all need support and maybe that lady had just had a bad day or something. Thanks for all you do!