Friday, March 14, 2014

Oh Internet: How To Avoid The Cult of Sick Online

This is something that has been upsetting me for some time.

So I thought I'd do what I always do...

Post it online. Because by now I have learned that I am not alone.

That and I need to blow the whistle in regards to some recent worship of diagnoses that some have. In the interest in living, obtaining wellness, one cannot at the other hand be investing all their time and energies focused on creating a persona of "oh poor, pitiful me".

Especially when the persona of chronic illness was a lie to begin with.

***

In the years I struggled with full fledged anorexia nervosa, I ran into many boys, girls, fathers, sisters, uncles, and even grandmothers who could not give up their identity as someone with an eating disorder. This left me to question why the adults were in treatment, given that many came on their own free will, and essentially wasted time, money, resources, and their own breath by being there, prattling on about food, weight, and the sick obsession with reuniting with their eating disordered behaviors upon returning home.

In a way, this is understandable. Eating disorders are not only severe physical and psychiatric problems, but they are hard core addictions. Yep. That's right. Just like the closet drunk on her work hour stealing sips of Jack and Coke from a soda bottle. Just like the dude down the street dealing Chronic from his lame armature laboratory, putting all customers at risk from a faulty product.

Addictions are hard to claim victor over...but in the end, it's worth it to be free of the shackles that bind.

So imagine my dismay, when I thought that I would be able to live a productive life (or, rather, a life I would have chosen) as I was healing and ready for the next step. If you have read any past posts, you can clearly see that things did not go as planned. I went from having a diagnosis of gastroparesis in 2007, to a rare form of dysautonomia in 2013 that has caused pure autonomic failure twice, and a plethora of very, very sad diagnoses I won't put here.

Maybe in time. Maybe not.

At any rate, I was very happy to find a corner of the internet where there were others who also battled the same beast as I. In so doing I have made some great friends, connected at the heart with people I NEVER would have gotten the privilege to meet otherwise.

However, earlier last year I notices a few somethings amiss.

For one, I was getting a lot of attention from others...as in, asking a lot of questions about my diagnoses, the treatments I was receiving, and as I got to speaking more and more often I was upset that some of these people struggled the same way that I did, yet were unable to get what they needed.

Little did I know that what they needed was not what they wanted...yet they were able to get what they desired by parroting my own research, and my exact illness to a new professional.

And once I found out, by word of mouth and by being involved in the same support chats that there were far too many similarities.

I realized too late that I, through the sheer desire to want to be supported as well as give support to others in their time of need, I has contributed to another person's vow to live their lives as someone who is very, very, very ill indeed.

Choosing to live out this same life that I STRUGGLE DAILY to live. Except they do not have to fight the same way I do...because they are actually not going through the same battles I fight moment to moment.

There is an experimental term called "Münchhausens By Internet". It's termed as a "phenomena", as it looks different from Münchhausens (when a person makes themselves ill for attnetion) or Münchhausens By Proxy (making a dependent ill so they can glory in the attention as one who is saving the life of someone who is helpless...by nearly killing them).

Sometimes in MBI, the person only lives a "sick" life online and a normal one outside the computer screen. Others carry their delusions into their daily dealings with people and further. In any event, this disorder causes the person to become so far engulfed by their delusions they start to believe them, whilst harming others who either think they are in serious touble...or by taking the real life of someone who has almost lost their life and making a game of it.

I had to learn about this the hard way. In fact, there have been times where in discussion I attempt to correct a person who is giving wrong information about my their diagnosis, to which they have the gall to ask me for studies referencing my claim.

The reference is my doctor...the person who went to medical school, learned much more than some crazy online will ever be able to comprehend.

The reference is how I have had to adapt day to day: how I've been separated from loves and life experiences to FIGHT for my VERY LIFE.

The reference is broken trust.

The reference is still pushing forward, having one more lesson learned.

(It should be noted here, that eventually the person who is caught in Sick Culture Fantasy Land gets caught in their lies. For them here I have a lot of compassion, since not only are they stripped of their identity, but they also endure humiliation. The point is not to demonize those with a legit psychiatric illness -- though I will not give up my right to experience the loss, learn from my mistake, and move past it -- but rather to keep YOU OR YOUR LOVED ONES SAFE).     

So...how does one draw the line between giving support...and giving "sick tips"?


  • Note how often you converse with someone about your condition: It should stand to reason that people are curious about what they do not understand. Questions are normal and healthy. However, endless conversations about your own experiences and how yo interact with medical professionals is not normal or healthy. Draw a firm boundary. Know how much you are ok with sharing, and do not let anyone push past this.
  • Where is your friendship with this person based?: Here's a tip: if all you guys do is talk about/compare notes on illness that isn't a friendship. It flat is not. Friends share multiple views and opinions on a  range of topics with one another (and you do not have to agree). Friends take genuine interest in you when you're doing well, as well as when you are not. If you only get messages from a person when you are ill, that's a red flag. You may lose boundaries depending on how ill you are at the time, things get forgotten, and a that point you do not have a friend. You have an abuser who is using you for their own gain.
  • Fishing: Medications are hot topic in chronic illness groups. I would advise that you do not compare notes on medications. For one thing, there is a possibility that who you are talking to is a drug seeker, and they want to know what they need to say to get their fix. I made this mistake twice. Now there is a person getting high daily off of drugs past doctors denied them...talk about a guilt trip.
  • Entitlement: If a person asks you how you got certain permissions that are generally not granted or not allowed unless one is very sick (...) stop the topic immediately. Common ones I've been asked are: how come I never have to share rooms in hospital even when rooms are dual occupancy, how I was tested for my diagnoses, the results of the tests, why I am allowed certain pain control medications at home, how I got a specialty wheelchair, how I get multiple specialized items, and the list is endless. Yours may be similar or different.
  • The old "gut feeling": This is where I screwed up. I ignored many signals that something was off with certain people. I thought that those alarms going off in my head were evidence that I was a heartless person...as it turns out, it's the other way around.
This list isn't exhaustive, and neither is this post. 

But for the safety of all involved...this is at least a start.

If you know you have been living the life of someone with life limiting conditions but still have the gift of a life less fraught with terror and uncertainty, please know that you are, indeed, very sick. Just not with what you think you would like to be sick with. Overcoming this kind of mindset is extremely difficult, and is takes a lot of bravery to be able to not only see it, but to do something about it.

There is help available. If you are having trouble finding it yourself, there is a way to email me from this blog. Feel free to drop a line, no questions asked. There is no shame here. Is there upset on my part? Yes.

Have I written things that could have been less harsh?

Yes.

However, this is where I am. This is my experience, how encounters with others have affected me. While I won't go back on my words (I stand behind what I say), I will say there is no anger. There is only sadness, frustration swirled with some humiliation...but in the end....there is ultimately, most importantly, the desire to help.

<3 Danielle Nicole. 

4 comments:

  1. Hey there Danielle! I have seen you post concern before about these copycat folks on inspire. This part about entitlement kind of freaks me out. When parents with kids with special needs get together this is a lot of what we talk about. But maybe it us different since I see their child. Good to trust your gut. Guess that part freaked me out because those ALL seem like perfectly normal questions for me to ask or be asked. I find it amazing that there are people out there that think these sicknesses would be 1.fun to have and 2. Fun to pretend to have. I'd love for Christianna and I to not have to deal with all her crap. Hugs to you everyday.
    Love, Lin and Cianna

    ReplyDelete
    Replies
    1. Lin, I have a lot of faith in the special needs community when it comes to certain circles. Oley is sort of iffy, but there are so, so many fantastic folks there that I associate with them instead ;) in time it will get easier to discern the truth from the crap. This post was my attempt -- from personal experience alone in dealing with others who do suffer from this condition -- to warn others how to not get enraptured in their own illness process. It's damaging to both parties. In no way, shape, or form is this professional advise...which is why I did put in the article for those who have the understanding that YES their falsehoods will be discovered and YES it is admirable to stop the charade and get the needed help, of which I do have the resources.

      But don't let the fear of what others are doing stop you from finding support online. The key is just to sort of be aware and to go with your own instinct.

      Delete
  2. I just spent a couple hours reading your blog thinking "wow, someone I can relate to".. I have been posting over on inspire and have seen a little of this. It seems in many groups if you are not "sick enough" or seen as dying, you are not accepted and given support. Sometimes it seems like a contest of who has the most problems/issues. The part that bothers me is that people are being judged on if others think they are legitimately sick/disabled or not. I was told something like "you dont belong here" on my second or third post (not a great start). People generally seem nice, so I just didn't realize people are being that harsh. I really dont fully understand this whole "chronic illness culture" thing. I grew up hiding disabilities because I was ashamed of them. I felt inferior, ashamed, and denied help of any kind. In recent years I have accepted my disabilities, and currently I am being forced to accept chronic illness. For myself and many it takes a lot of courage to get out of there comfort zone to post on websites like inspire. It takes a lot not to simply stop posting when feeling judged or threatened.

    ReplyDelete
    Replies
    1. Todd,

      I'm sorry to hear this, though I must admit I am not entirely surprised. Please remember that any suggestion of you not belonging on Inspire, the Oley foundation, or elsewhere is a reflection on the person who suggested it...and not on you.

      Chronic illness is in no way a game...there is no such thing as not "sick enough". I would encourage you to please speak up (I am delighted that you feel that I am speaking to you too in each and every post I publish), especially if you are posting on the Oley Inspire forum. I only include that specific badge to help other people who need it and I will not publicly support a forum where this continually goes on to the point of a person suffering in silence.

      Online forums are an avenue to be heard and understood. They do not exist to parade medical crap like a show dog and anyone treating it as such has serious problems much further reaching than what can be addressed on the internet behind a screen where stories can be fabricated and photos embellished.

      This blog that exists only for a single purpose, and that is that YOU as a reader find kinship within these words. I describe my own journey so that you can see you are not alone in this multifaceted struggle. You've found a friend here. If there is ever anything you think I can help you with please feel free to contact me via email or message me on the Inspire forum.

      Delete