…more than likely, you just want a place you can talk about what you’re facing and feel normal again. What could be better than a place where other such people congregate? It sounds like a good idea, right? Support groups really can be wonderful places when you just need to get out the things that are clogging up your thoughts and they’ve helped a lot of people! This post is not to discourage you from seeking refuse among fellow survivors, so please don’t take it that way. We’ve suggested support groups in articles before. However…

The problem with seeking out havens where abuse victims, survivors, and suffers congregate is that they end up attracting those people who are truly attention seekers as well. These groups tend to become locations for people who want to publicly measure their suffering penis length or play the Pain Olympics. You end up finding those people whom you find yourself questioning how genuine their experiences are as they constantly flip-flop the history of their story, trying to soak up any and all attention they can get. Their stories sound like everyone else with just a bit more drama and anyone who presents with the slightest skepticism or question for elaboration is met with hostility matching that of an active volcano. We’re talking about psychic vampires. Not the mythical creatures that you might find in a horror movie, but a specific type of person that seems to be a black hole of negativity no matter the situation. These kinds of people are not only the “Debbie Downers” of the group, but (like Hollywood vamps) can easily “turn” you if you don’t know to be on the lookout.

They’re Not As Easy To Spot As You Might Think

Identifying problematic people can be messy because there are always going to be times where we will have gone through similar experiences as another, but slightly worse. Because of this, we should be hesitant to be hypocritical and unsupportive of a fellow group member that is saying how they’re going through a rough patch…at least…most times. Sometimes, we even become afraid to share our own stories so we don’t come across as minimizing the suffering of someone else. There is truth in sharing can create empathy, and that is, in fact, what the groups are there for. There is also a fine line between sharing in solidarity and playing Pain Olympics.

In fact, that feeling of fear in regards to sharing our stories can often come out of interacting with a psychic vampire, knowing that this type of sharing can catch the attention of the type of person that will draw attention and sympathy to themselves while minimizing your experiences. Those that seem ready to jump on any post with how much their suffering is so much more extreme that you should be grateful that you don’t have their life.

This all has the potential to create a further feeling of isolation because in a group of what was expected to be similar minded peers, you again start to feel like the odd sheep out. Instead of finding support, we start questioning whether we should feel as if we’re struggling in the first place compared to those that loudly cry about how they’re suffering so much they are useless. Instead of finding encouragement, we find ourselves surrounded by those loudly cry how we shouldn’t do anything or how our accomplishments make them feel bad about themselves.

Making a Psychic Vampire

It’s not as nefarious as it sounds. Often, those of us that are living through invisible illnesses…we lack validation for what we’re going through. You see it in those that have been recently diagnosed. It’s talked about often as they go through the intense journey of processing what their diagnosis means to the rest of their life and even their past experiences. They ask 5,000 questions about what is normal and abnormal and common and if anyone else has suffered like they have. This is completely normal and it was touched on in a past post how a diagnosis can be a curse and a blessing at the same time. It is nothing to be ashamed of, hide, or shoot holes in if you’re on the outside looking in. It’s an important part of learning to travel the road of coping.

The problem comes about when that feeling of validation and support is too good to ever let go of so we can progress above it. The idea is no longer finding support. It is no longer showing empathy. It is simply to commiserate and continue the attention that has been lacking for so long. Psychic vampires don’t want to progress into feeling better because that means they no longer get the sympathy and attention they feel they need. Therefore, they don’t want you to feel better or focus on positive either because that means they’re more likely to be outed for what they are. They’re good at a sneaky kind of manipulation, that may not even be a conscious effort. They’ll respond in a heart beat to a post about how things suck to compete in Pain Olympics, but they’ll ignore more general or informative posts. They’ll constantly ask for encouragement on bad days but refuse in angry fashions when advice is suggested. And this is not a rare occurrence, it is all the time. In this way, unless you’re conscious of this process, you may start to find yourself interacting with these groups simply to complain and whinge rather than continue on a path that may bring you relief of any measure. Why? Because they’ve shown you that you get more attention and sympathy if you play Pain Olympics with them than you do if you choose to be hopeful towards the future. You get more “likes” and comments if you continually go over rough moments than if you share happier times.

There is also a type of awareness that one can sometimes gain from living through trauma of any sort; how to hurt people. We learn by watching and experiencing it first hand. It is one of those things that tends to be overlooked and ignored. yet a large number abuse victims and chronic illness patients we’ve met have “teeth and claws”. A morbid sense of humor or a quick wit. And yeah, this is part of how we survive and also part of how those cycles continue. There is this moment and feeling of power that comes with the moment we realize we can use what was once used against us. Not saying it is a good feeling or a liked feeling, but that moment when you have been through the pain and later someone provokes you…you find that perfect way to lash out at them that leaves them stunned? You suddenly go from helpless to powerful. It is a dangerous cycle and in a way it gives suffering a life of it’s own, after all that is almost a form of procreation in an abstract way of thinking about it. But unless we are careful to be aware of that potential within ourselves, we can easily find ourselves lashing out at support group members that have rubbed us the wrong way for a variety of reasons. They have a lesser version of our illness, so lashing out and making them feel small brings satisfaction that our pain is bigger and worth more.

It’s easy for anyone to slip into that has experienced long-term suffering. These actions lay between a security blanket of support and the power control brings. As said above, it’s not that most of these people are consciously making a decision to do this, and that’s the part that can make it difficult. They’re suffering, in more ways than one. but the scary part is the potential to be dragged down with it.

So What Do You Do?

The main thing is to be aware of it. Know that it is absolutely okay to reach out in times of need, but to not make it a way of life and to not engage those that are doing so. Don’t think you should go on a Psychic Vampire Crusade, for in truth, these people are just suffering and have decided that they’re not able to look for the light at the end anymore. You don’t need to point out their pain to them, just as you don’t need people to twist the knife in yours. Don’t spend your time hunting them or trying to fix them. As with all of us, people can only be helped if they are truly ready to step out into the sunlight on their own. You know that old adage how you can lead a horse to water? It works for people too.

If you find yourself getting down and drained when interacting, take a step back and interact with people or things that bring you joy. If not joy, at least comfort that doesn’t surround living in negative moments. Watch your favorite Netflix series, read a book, sleep, find a friend you’ve gotten out of touch with and reconnect. If you don’t have anything like that? Find something new you’d like to try. Give embroidery a shot and see what you can accomplish. Have fun with finger paints. Go to a coffee shop with live music. Accomplish something, no matter how small it is, and celebrate.

As said earlier, every one of us will have bad days, bad weeks, bad years. It’s not about never having them or never showing that they’re suffocating you in this moment. We can’t always be superheroes and push ahead full steam with a smiling passion that rivals a manic pixie. We need to face those times, and we need to reach out in those times. But we can’t afford to live there or let others drag us down to revisit that place any more than needed.

She says “Oh.”

*Fact: You never want to hear your doctor say “Oh” when looking at any test results

I say… OH???
Her…Your neck is bad. Really bad
Me…….. >Can I just get a new body? Because this one sucks donkey turds.
Her….. No, but let’s see what we can do.

Increase Gabapentin to max dose.  Another round of my favorite <snark implied> nemesis, methylprednisone.  Add Topamax for migraine control and to help with the tremors in my hands caused by the nerve damage in my neck.  Order an inflatable home c-spine traction device.  Caudal injections in my l-spine and SI joint . She wants an epidural block done on my c-spine .  All of this in an effort to put off cervical spine surgery for as long as possible .

It’s one of those days where too much happened in a very small time frame.  And now, I’m sharing my pity party with all of you.

But, I will process these new problems, and I will add these new meds to my overflowing pill planner.  And most importantly, I will tell myself what I always tell myself whenever a new roadblock pops up.

It is what it is.

If I cannot change the facts, fix the problem, well….. there is no point in making myself miserable over it.  We cannot dwell on that which is impossible to change.
               
*Pssssssst…  I still want that new body.  Preferably one about sixty pounds lighter, and ten years younger. 

For me, as a child of the seventies, none of the doctors in my pissant, backwards, steel town, had even heard of Ehlers-Danlos. Of course neither had my parents. It seems as if I always knew that my joints were different, that my body could do things other kids couldn’t. It started when I was quite young, I believe I was three when the doctors put me in hard, metal braces with special shoes, from my ankles to my waist.(think Forrest Gump) There were multiple reasons given for the braces… hip dysplasia and spontaneous subluxations of the hips and knees. Ankles that were weak, etc… I wore those things for two and a half years.

I can’t remember a time when I couldn’t spontaneously sublux whatever joint I wanted. I delighted in freaking out my classmates by pulling my shoulders out of socket, and then putting my arms behind my back, but in the opposite direction. I was pretty athletic, and I  sprained my wrists, knees and ankles more times than I can count. The doctors would be astounded at the enormity of the swelling in my sprained joints, and would insist that they absolutely *had to be* broken… Nope, always sprained. They told my parents that my joints were just “wonky”.

In addition to all of the problems with my joints, I also had numerous issues with my bladder and kidneys.  Most notably, the urethra tube between my kidneys and bladder wouldn’t stay open, causing urine to be trapped in the kidneys, causing massive infections.  The urologist would stretch it back open only for it to close up again a few months later.  I spent so much of my childhood in the pediatric wing of our local hospital, once staying for almost a month!  I had my favorite nurses, I  even learned how to ride my IV pole in the hallways.  But still, not one of my doctors put the puzzle pieces together.

I grew up, I joined the Navy, and even they thought something was wrong with me (I developed my postural tachycardia while in the Navy) Forever passing out whilst standing formation, waking up in medical, hooked to an IV, getting electrolytes. They even referred me to a rheumatologist, but they came up empty.
Then came my first shoulder surgery, my right one, it just would not stay in place. An open procedure was performed, leaving me with hellacious pain, and a scar from the edge of my neck, all across my shoulder blade. Still, no doctor caught on.

An accident in 1999 resulted in a posterior dislocation of my other shoulder, I’ll spare you the details, but after five separate surgeries on my left shoulder, it still subluxes if I dare pick up a gallon of milk with my left arm. Still, no bells went off in my doctor’s brains.
Another accident, more surgeries, tachycardia, degenerative disc disease, SI joint dysfunction, trochanteric pain syndrome, gastro, and the list went on and on.
Until one day, at forty-seven years old, I sat in my primary care doc’s office.
Me “My knee is bugging me, especially when it slides sideways out of place”
Him “Knees don’t slide sideways out of place ”
Me “well… mine do”
*proceed to demonstrate*
Him. *shudders*
“First of all, never do that again. And second, you are going to see a rheumatologist, because suddenly all of your problems make sense.”
The rest is history. Saw the rheumatologist, she confirmed diagnosis, and suddenly I’m a Zebra. And I have never felt so vindicated in my entire life.
I wanted to tell all of my childhood doctors, and my parents, and even my teachers
SEE????? I was not, and I am not, a hypochondriac.

Wow, that took a lot to write, but I feel good for getting it out there.
Thanks for *listening*
~Tammy