Hi my name is Terri and I have associative Trypanophobia. For those not familiar with the term it is a form of Trypanophobia caused by a traumatic association in my case from a series of daily injections over a two week period when I was barely two years old and reinforced by a god awful gamma globulin injection when my dad got hepatitis when I was 10 or 11. Oh, its the term Trypanophobia you're not familiar with...well if you haven't figured that one out by now, it's fear of needles, and its a phobia that the medical community fails miserably at dealing with in a productive manner.
I'm ranting about Trypanophobia tonight because both my best friend and my daughter have to undergo medical procedures tomorrow that will require needles. Since my daughter hasn't had blood drawn, ever, before now we don't know yet if she's Trypanophobic or not. My best friend on the other hand has a form of Trypanophobia that can actually be dangerous. Vasovagal Trypanophobia is the most common type, affecting 50% of us, I have had episodes of this type but it is not my primary type. The vampire has to have REALLY screwed up for me to head into vasovagal syncope. It's actually an inherited type with 80% of sufferers reporting a first order relative who has it as well.
According to the wiki on Trypanophobia Vasovagal: The physiological changes associated with this type of phobia include feeling faint, sweating, nausea, pallor, tinnitus, panic attacks and initially high blood pressure and heart rate followed by a plunge in both at the moment of injection. It's this vasovagal shock reflex that can be dangerous to the patient and in exceedingly rare (23 documented) cases actually fatal.
Now, you would think that a phobia that has the potential to cause actual physical danger to the patient would be treated with at least a little bit of compassion and concern by the medical community, after all the first principle of the hippocratic oath is "Do No Harm" but in my experience this is rarely the case. And if the patient is MALE the lack of compassion and downright refusal of medical personnel to be helpful is especially shocking.
I have encountered lousy attitudes and a lack of willingness to accommodate my Trypanophobia most often in Emergency room and Surgical settings. My internal medicine doctor knows that I will, and have, simply walk out if I get a bad attitude or worse a bad vampire. Consequently he sees to it that I get the very best they have to offer and if that means coming into the exam room to me where I can lay down and do my relaxation exercises rather than asking me to sit in the lab that's what they do. He also knows that if I say, I am not in the right head space for this today its in all of our best interests NOT to try. We have an understanding, one I broker with every new physician that I partner with on my health care team, I am in charge when it comes to needles. Yes, I can and will fire a physician over this issue.
Now as a woman I might get an eye roll when I lay out the fact that I am needle phobic but ROUTINELY without ever having to ask for it I am offered the option of an oral sedative or anti-anxiety med when I have to have a planned procedure that involves needles. I generally don't take those because they don't seem to help me personally as much as finding my zen via ocean sounds on my MP3 player and self-hypnosis techniques BUT they're offered. My only major problems have been in emergency settings where I usually come out looking like I have been beaten from the bruising from failed IV placement attempts. Consequently I have to be SERIOUSLY ill or in pain to even consider an ER visit.
My best friend on the other hand has to ask, BEG actually, and even then he is ROUTINELY refused. Today it happened IN WRITING from a new PCP that couldn't even be bothered to tell him herself to "get over it". He's actively had medical personnel make fun of him while in the midst of a vasovagal reaction. He's spent this entire week patiently attempting to educate his medical team about this and rather than offer him any kind of quality of care they've stated that "needs to overcome his fears". Thanks to the small health food store there and a few resources I had here we've figured out a few natural things to hopefully help him through tomorrow but damn it it makes me furious that we have to go to this extent to manage what is clearly a common issue.
In every other country the numbing cream EMLA is available over the counter, parents routinely purchase it and apply it on their kids prior to needle procedures. In THIS country you have to have a prescription and in order to GET that prescription you have to be able to be taken seriously and dealt with compassionately. Clearly that's not happening here.
I am really angry. Life with a chronic illness sucks. Life with a chronic illness that requires regular blood draws sucks even more. Adding Trypanophobia to the mix adds yet another degree of suckage. Having to FIGHT to get a compassionate response from the medical personnel who are supposed to care for you though is the peak of suckiness and for those of us with this phobia who also possess a Y chromosome it seems that even the fight is too often futile.
I don't know the answer but its about damn time to raise the issue.
I rarely get caring reactions to anyone in the medical field over my blood pressure spike and severe anxiety when I see a needle.
ReplyDeleteI had a pediatric nurse smart off to me and tell me I was being irrational for freaking out over an IV. I was on a double dose of anxiety medicine and still having a total meltdown.
My needle anxiety has gotten better, but it has nothing to do with "getting over it." Compassionate people ease the situation and are priceless to me!
Also: many people seem to think that mustering up the courage to get my mom's signature tattooed on me means I'm not terrified of needles anymore... NOPE. I had a deep desire to have something of permanence and an amazingly compassionate artist who understood my fear and helped me get through the short process.
Good luck to both of them tomorrow! May they find compassionate medical professionals who take the time to do no harm.
Also, I always linked it back to a time I remember a doctor holding me down and getting shots. I also can't stand the back of my knees being touched for that reason... I never knew there was a term for it being related to something that happened when I was young.
DeleteI manage it but I'm not ever likely to be "over" it. I'm sorry to hear that your experience has been more like my friend's. I have had a handful of truly horrible experiences but in my world they are the exception.
ReplyDeleteFor awhile, when Joel was at his lowest with poorly managed Hashimoto's, he got to where he just couldn't take one more needle. Teddy did, too, at one point, when he was constantly being tested for blood thickness, etc, when he had almost died. It's so hard to see a grown man shaking and almost in tears,or even in tears. I think maybe it's better for a guy not to even tell them he's got a phobia. Maybe just trembling and crying get a more compassionate response. I would say, "He's been through so much recently," and they'd get a compassionate response. I never even told them I had to go first getting the marriage blood test back in 1980!
ReplyDeleteMy guys don't actually have the life lone phobia, for for a time, they had been through so much, it's a miracle they didn't acquire one permanently. I'm not excusing how the medical personnel treated you or your male friend. I'm just saying sometimes it's better for YOU to do what works for you, rather than expecting people to be more intelligent than they actually are. There are times to be politely passive aggressive, and just demonstrating fragility instead of verbalizing it seems more effective when dealing with the medical community. I've learned that allowing myself to cry gets me further than calmly explaining my symptoms and needs. Of course, over doing it doesn't work. Striking the balance is hard because once the emotional dam is breached, sometimes it floods! Sigh. It shouldn't be so hard!