Thorny Fallout….

thornbush

I was totally unprepared for the response to my blog last week.  Really… really unprepared.

Can I just say that I started writing a blog for me.. and for my family so they would not always have to hear me say all the things I vent about (or celebrate) in my blog.  But I also write it because I think that sometimes, it may be useful for some other JA parent – we have so many things in common. This JA business can be a lonely thing.  So of  course, I like the idea that I might help somebody else.  Who wouldn’t?

But – I’m not like.. a Blogger. I don’t have a plan for how to “generate traffic” and apparently I should be concerned about an RSS feed – but I’m not certain I know what that is. I don’t know how to “pin” anything and I haven’t ventured onto instagram yet. I only just recently figured out how to connect my blog to its own facebook page. It took me forever to set this thing up, pick a design and click the right boxes – and I haven’t looked back since.  I dream of doing it someday – making it all modern and cool and connected – because it seems really promising and I know a bunch of people who do it really well – and even get paid for it! And they win awards for Best This Blog and Awesome That Blog – and they amaze me.

But me?  On my highest blog view day before the thorns – I had 121 views I think.  And do you want to know how most people land here?  Because even a novice like me can look on the “stats” feature in wordpress and see how people find me….. Most people accidentally type the letter “R” and hit enter.  And I have a blog post called the “R word”.  Voila!  661 hits in the last 30 days brought to me by the letter “R”. Also searching “fingers crossed” (125 hits), “Big Sur” (248 hits) and “cease fire” (236 hits) are great ways to stumble upon me.  Where I live, Kardashian flatulence would get about 1 gazillion times more exposure than my little mom blog.

Imagine my surprise when I wrote a little personal response to a giant article in the NY times and got close to 1000 hits in two days (plus another 500 plus on arthritis.org).  And I actually think that most of them came from people who read the entry.

Believe me, I’m not complaining about the fact that people linked, forwarded and shared it.  If I did, this would be a private blog… or I would simply talk to myself in the shower instead.  I’m grateful for anybody who would spend some of their valuable time reading my words. Normally – I’m happy when anybody comments at all – and I do have a couple of posts over the last three years that have two or three responses! So you can see that I was not prepared for all of the comments and feedback – both positive and negative.   And just when I thought the hubbub had died down – the Arthritis Foundation (where I post the same entries of this blog in their online community) put my blog on their facebook feed and the storm whipped up again.

And at first I was all chuffed up – because I had so many parents actually THANKING me for saying something that reflected what they were feeling.  Oooohhhh, and I was feeling so loved and happy and felt something strangely resembling accomplishment!  I think I really helped some people feel better… and there could not be a better use of my time and energy, right?

But then, some people who did not feel such endearment starting offering their feedback. And some of the things they were saying did not make me feel so lovely…. because it wasn’t really about what I wrote all the time.  Sometimes, it was about me personally.  I was Judgemental.  Unsupportive.  Reactive.  Closed Minded.  Mean.  Offensive.

What?  Offensive?  I tried so hard… to choose.  every. word. carefully.  Seriously – I’m not a professional writer – but I’m not exactly a hack.  I tried so hard to come out in support of families like me, without slamming families like the one in the NY Times piece.  I am vanilla that way… Look at me!  I am Switzerland! Because I do, in my heart, believe that we are all part of some large family of those dealing with these diseases…. and I’m really not about spitting on anybody’s parade.  I spent five hours writing, reading, re-reading – forcing other people to read, rewriting some more before I hit publish.

So when the feedback turned negative – I had to fight the urge to defend myself to everybody. I had to stop myself from saying – didn’t you read the part where I said if I were in her shoes, I would be singing it from the rooftops as well? What about the part where I said I hoped that the information would help some people? I responded once, on one feed – and then just sat and watched in surprised horror as people carried the conversation forward like an angry tidal wave. What had I done?

One particularly heavy afternoon last week, when I was all woeful feeling the wrath of this, my boss asked me what was wrong. And after I explained it, my boss who is very wise and schooled in spiritualist thought from around the world said – “But you said what you had to say.  And people’s responses, whether they are negative or positive – are about where they are coming from.  Their space.  Not yours.  So you can’t control where they are coming from. You can’t control their response.” Like the wise Yoda, she is.

Hmmm. So…. maybe when I responded to the NY Times piece, it was about my own frustration that a major newspaper finally devoted this HUGE amount of space to the disease my daughter suffers from… and I felt that the portrayal was not complete and may even be harmful.  It was about my own fears over the years, my own anxiety at every choice I have made… my own frustration that even today, when a young girl I know just lost all of her hair because of this – this disease is still misunderstood and trivialized.

And maybe… when some people read my response – they were upset that when their own point of view, favoring alternative therapies – which is often dismissed and called quackery – finally received some positive attention, I was right there to shoot it down.  Their responses to me may have been less about me, and more about their own frustration at trying to get people to understand what has worked for them and why they have chosen their own path.

We’re really not all that different…. coming from a position of challenge.  Trying to overcome the same obstacles – just in different ways.  Dealing with many of the same misperceptions in this world.  All of us, ultimately, wanting to be cured. See what I mean?  I’m more Swiss than Heidi!

I did actually contact somebody who had offered a different perspective directly to open a discussion… because it’s my own personal flaw that at the end of the day, it was the negativity that chewed on my heart, as much as I tried to let all of the positive responses build me up more.  It ended up being very cathartic and enlightening.  I understood everything so much better…..because many people DO agree with the tone, content and message of the NY times piece.  And if you follow alternative therapies – you already deal with negative feedback and people dismissing your ideas.  If you read the 665 comments at the end of the article (and yes, I did) you would see that they were overwhelmingly in support of that narrative.

So- I would like to clarify – for the 30 or so people who actually read my blog and the other 50 who happen to land here by searching for the letter “R” -

I’m not sorry for what I said.  I really meant it.  Every carefully chosen word. And it absolutely came from my heart –  it was my gut reaction.  But I also don’t want anybody to think I don’t celebrate that mother, or that child’s remission, because I do.  And I don’t want you to think that I am unsupportive of you if you are controlling your disease, or your child’s disease, in a way different from me… because I’m not. Do it however you can! My defense of me and parents like me was not meant as an attack on anybody. My attempt to add my voice to the fray was only to battle for a greater awareness, greater results, greater future – for all of us.  If I gave you any other impression, well, I am sorry for that.

And even though my skin is slightly thicker now… if a hypothetical response of mine should hypothetically get posted in some paper this weekend – before you shoot a flaming arrow my way, I would ask you to remember that we are basically on the same side. Basically.  Same thing goes if you want to send flowers and chocolate :)

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9 Responses to Thorny Fallout….

  1. Michelle says:

    You are smart, funny, courageous, loving, strong, an amazing friend and mother…I could go on and on. If your words make one person think about arthritis who doesn’t, give one person information they didn’t already have or make one person feel a little better about the tough decisions they have had to make then you have done more than most people. To MY yoda…wishing you love, peace and happiness.

  2. Veronica says:

    I will send flowers and chocolates. Better yet if we see you on Saturday I will buy you a drink. Well done good friend. Love you! 😀

  3. I suppose that it shouldn’t surprise me so much that it turned ugly. I know where you were coming from. I have had people speak up for the holistic side several times on my blog. There is a mom who lives somewhat close to me that swears that her child had bad JA and was cured by the GAPS diet. My child tries to control food because it is the only thing that she can control. She hates everything. I would love to try GAPS, but honestly with as mixed up as Emily’s diseases are, I really don’t think it would help.
    I know a girl that is sugar free, gluten free, on a ton of holistic remedies, and doing much better… but she still has joint pain. It can help- of that I am positive. But it can’t fix everything for the complicated cases. I would be too afraid to simply change diet and hope for the best. I’m pretty sure it wouldn’t turn out well.
    I guess that we all try to impress our views upon others, but other people should have considered their words as carefully as you did. Shame on them!!!

  4. JRA Mom says:

    My comments are from this blog and the Gut Reaction.

    I am really happy to read your words. My daughter is now also in 13 and in remission, but I cannot thank either way for her luck (for lack of a better word). I liked how you spoke that 12 years ago many of these medications were not there. Some of them were out there when my daughter was diagnosed, but her doctor was not willing to place her on any of them. Partly due to the fact they had not been really tried on children a year and a half old, and partly because the naproxen did not process correctly in her liver (it simply built up). So to not cause liver damage he took her off that too. My child never took medications, she suffered in lots of pain for years, but no meds. I will say that over the years we have found that some foods don’t agree with our child and removing them from her diet has helped with the issues.
    Every child that has this disease has it different from every other child. The ones that are the worst in understanding this are actually other parents of children with the same disease, myself included. I have been called a lier, my story just doesn’t sound right and so on. Like you I got frustrated, but I did not have Yoda to help me. Especially, when a child was the one being crucified online. I have gotten angry and I have spoken up for others being bashed. I regretted it later because I sounded just as crazy as they did, which did not help the cause it actually hurt it. There are several people in the online communities that don’t like me and several I wish I had never met. I simply try to stay away from them the best I can. The amazing thing is that I have met some awesome people also, so it is worth it in the end. I simply try to hold in my temper and scroll on past.

  5. Jennifer says:

    I really, truly appreciate this piece, Thorny Fallout. It shows me that you understand, even though your opinion about all of this is not the same as mine. I think we all just want people to understand. I respect you as a person, and I respect the completely awful road your daughter and your family has had. But I have to say, I was one of those people who was slightly hurt by your NY Times/Dr. Oz responses (I never posted any responses until now, as I agree, we’re all on the same team!). I can completely understand why you feel the way you do, having had the journey you’ve had. But there are many of us on the alternative path who are seeing wonderful results. Being on this path feels somewhat like being a part of an underground railroad. You try to share things when you think it’s “safe”, but your opinion is not generally accepted and often criticized and so you keep to this lonely road by yourself (although, over time, you find others like yourself).

    I was very excited to see that the media is picking up on some alternative views, as alternative medicine has helped SO many people. And also how important it is that parents should be their child’s own advocates. I fear for those folks who never try eating better, organic, going gluten and/or dairy free. Those who never get tested for leaky gut, or Lymes, or Celiac’s, or heavy metal toxicity, or the host of other things that could contribute to being so ill (of course, none of these may be your child’s issue, but what if they are and you never address them? (general you, not you specifically)). The fact remains that no one knows what causes JIA (and there are so many types!).

    I think any reasonable person will follow what their conventional doctors say, at least at first (and we all have to remember that doctors are people and don’t know everything either). All of us get thrown into this knowing nothing about it and we have to start somewhere, and fast! But I think not knowing the cause should mean you investigate all avenues. Make healthy changes as much as you are able, with as many things that are within your grasp. Learn about EVERYTHING! It doesn’t mean you’re a fool if you try something unconventional and it doesn’t work. Again, unfortunately this disease, and diseases like it, are trial and error in finding what works (whether it’s natural or conventional). It breaks my heart to see some of these sweet young children doing so poorly, failing all of these meds with no relief in sight, and yet, their families haven’t even considered trying something natural because they put their full trust in a conventional doctor (and don’t get me wrong, I am not blaming parents AT ALL for what they are choosing, we are all just trying to do what’s best with the information we have. It just hurts my heart because I have seen the natural side of things and they help many people. Maybe it wouldn’t help them, but maybe it would!) If what you are doing works, keep doing it! But if it isn’t working, for God’s sake change your plan! If my child was completely on a conventional med approach, and the meds were working for her, you can bet your ass I wouldn’t change a thing. Remission is each of our goals no matter how we get there. I would never suggest dumping meds in exchange for an all natural treatment plan, but I AM suggesting not dumping natural treatment in exchange for an all medical one if your current treatment plan isn’t cutting it. Parents should be encouraged to travel all roads, not just conventional medical roads.

    I guess, I fear for those kids who are much like my daughter. What if I had decided differently? What if I had gone with an all conventional medicine approach and not investigated the root cause? What if someone had discouraged me from looking into alternative therapies? I KNOW she would have been worse. I could guarantee it. Will she get to remission? Will she ever be “cured?” I can’t say that, but then, none of us can. I just hope people will keep an open mind and explore both sides before deciding on their path to healing. I want remission for each of our kids, I want a cure…but you can’t find a cure without finding the cause. Let us all be on the same team, and each find our own cause. And let us not judge one another on this journey, as each journey is our own, and each road is not the same.

    Much love and respect. <3

    • Jennifer- I appreciate your post a great deal. Thank you for typing such a caring, thoughtful post. What you have said makes a lot of sense. It is sad that so many people feel that they have to “pick sides” when we are all in this together.

      I have seen some people on my Dermatomyositis boards that are doing *something* untraditional. No one has posted specifics that I have seen, likely because they are afraid of the fallout. (Though it is more likely that I have barely been on FB!) That is sad, really. I applaud you for speaking up when I am sure that it may have been a difficult decision, and I applaud you for going the path less traveled. Thank you for your insight.

  6. Your daughter is a very lucky little girl. :)

  7. Alexandra says:

    Thank you so much for this, and your last post. Just found your blog today. My 3 1/2 year old daughter has just been diagnosed with systemic JIA. As in, about a week ago. After weeks of illness and pain, a hospital stay and a lot of confusion and terror, she is responding to medication (day 4 of no fever- we are cautiously encouraged.). We are on a steep learning curve and yep, receiving a lot of well-intentioned advice regarding diet and naturopathy etc. And I relate a lot to your perspective to being open to that- with the caveat that since our daighter’s life literally hangs in the balance, we are not hesitating to use the medication necessary to immediately get her inflammation under control. Your writing is very helpful to me right at this moment…thank you. (If you have online resources or reading you recommend, I would be grateful to hear from you- we are sort of stunned and at a loss at the moment.)

    • Cindy Price says:

      Dear Alexandra,

      My daughter has systemic jra, too. She has had it for 14 years, so like Colleen, I am well versed in the disease. I run a support group in Oregon and Washington for parents and children with JIA. Let me know if I can be of any assistance to you. Cindy
      bc.price@comcast.net

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