My Chronic Illness is Worse Than YOUR Chronic Illness

AKA the joys of comparing our pain.

So, I linked my last post to facebook because frankly its time someone in the medical community took the plight of the needlephobic, especially those of us who deal with a chronic illness, seriously and I happen to have at least a handful of friends that are in the medical profession. Two of whom train nurses. And I got THIS in response: 

 Usually on posts that I disagree with most people on, I stay away. But this one, hit home.

Like you, I suffer from an extreme fear of needles. Have ever since I was very little! There have been many times when large clinics/hospital departments have needed their entire nursing staff to assist the shot-giver because I was so terrified and wanted to move out of the room and never come back. 

HOWEVER, labeling this as a "chronic illness" simply, well, offends me. Living with a chronic illness is completely different than an extremely-strong fear of a medical device. I live with some chronic illnesses and this fear.. so I do know the difference; personally. 

When you live with something like Eosinophilic Esophagitis, MS, the aftermath of a severe stroke, Parkinson's, diabetes, severe-food allergies, artery disease, lime disease, sleep-apnea, chronic bronchitis, arthritis, and even asthma: you have to adapt to life, manage, and take emergency/precautionary efforts for your own livelihood EVERY DAY. Needles are a once in a while occurrence that *generally*, you can plan for.

Now clearly the poster hadn't bothered to pay the first bit of attention to where this conversation originated since "X" includes at least one of his "acceptable" chronic illnesses but that's so not the point. One of the things that this post reminds me of is the constant need by some folks to play the comparison game. I know enough of this kid's history to know that yeah, he deals with a pretty brutal chronic illness (because I bothered to read the things he's put out there about it) but that doesn't give him or any of us the right to invalidate the experiences of others. Who died and made us the chronic illness police? 

In the United States ONE IN TWO people has at least one chronic medical condition so really there's no place for the comparison game. When something affects half the population its rather pointless to pretend that having a chronic illness makes you special somehow. Now granted the kid in question is somewhere between 16 and 18 years old and I'm trying really hard to cut him some slack based on the fact that his brain isn't even fully developed yet but if you're going to get offended and start playing the my chronic illness is worse than your chronic illness game you do so at your own risk. 

As far as trypanophobia being a chronic illness itself, one that wasn't at all what I said or implied and two a phobia by its very definition requires the exact same adaptations and management that living with a chronic illness does. And it complicates any chronic illness that it is comorbid with. He actually did a beautiful job of illustrating my point about how little compassion people with trypanophobia get. 

Trypanophobia

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.