Medication Shaming

One thing that I have come across very often is medication/treatment shaming.Everyone with chronic illnesses have had their fare share with bad mediations. Someting that didn’t agree with them, didn’t help or had a bad side effect. It’s a fact of life for spoonies, but what I hate is shaming drugs that could potentially help someone. It always seems that  if someone had a bad experience with this drug, they posted horror stories on every related post on the world wide web. I swear they were like the soothsayer in Julius Caesar.. Instead of them saying “beware the ides of march” they were screaming “NEVER EVER TAKE THIS MEDICATION. MY AUNTS BROTHERS SISTER IN-LAWS COUSIN HAD A SEVERE REACTION. BLACK LIST THIS MEDICATION. NEVER TAKE EVEN IF IT’S LIFESAVING” over and over again. How is this helpful? It scares patients away from potentially life changing treatment, over a 1 in 1,000,000 chance of that particular reaction.

 

I’m a big promotor of telling people my experience with medication, but my goal isn’t to scare them with my stories. I always want to know what I’m getting into when I begin a medication, as I believe that is my right as a patient, but I think there is a fine line between helping a person and hurting them.

 

What is your thoughts on these types of posts? Helpful or hurtful?

 

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Support Pages.. The Good, The Bad, and The Ugly

I’ve recently joined a number of chronic migraine/headache disorder support groups on Facebook. I thought, Hey, why not! might as well get some support from people who really know what I’m going through. What is didn’t expect is members attacking each other for their treatment ideas, ways of life and worse off, being completely downright rude. I’ve never really been a huge contributor to these sites, just watching from the sidelines, jumping in when I feel I can be of help. my first couple of days in the group, I saw people posting, asking for prayers or just venting, and I saw an outpouring of support. I was amazed. I thought, hey, maybe I’ve found a gold mine here. I finally have found what I needed.. But near the end of my first week, I witnessed, on multiple different occasions, people being downright rude… telling others that “you cant be that sick if you’re on facebook” or “why are you in the ER, because you’re clearly not in that much pain if you’re posting here”. I was in shock. Was this page not meant to be a support page? The posts of others poured in, all against the rude poster. But I was still in shock. How could others be so ignorant of peoples personal situations. I see the same rude posters, writing that they don’t understand why doctors/friends don’t believe them. You have got to be kidding me? 3 hours ago, you were publicly shaming others for “not being sick enough and faking” and now you can’t understand why people do it to you? 

This is a constant issue I see in disorder specific support groups. People are too involved within their disorder and emotions fly…

 

I’m a big supporter of joining “non specific chronic illness support groups” because all we need are people who understand the basics of living with a chronic illness. Because deep down, we just need people who understand.

What if ?…What if it’s not “Nothing”

Wow, I haven’t posted since February.. So sorry for being such a bad blogger!! I’m going to try to start being a more dedicated blogger, hope you like my newest post! Please comment below your thoughts:)!

 

If you guys have been following my twitter account, you know what’s been going on in this crazy life of mine. I had an appointment from hell with my pain management doctor, and then she did a 180 when I brought parental reinforcements to my next appointment, and started helping me again (although I’ll never trust her again).. She referred me to the ONLY headache specialist in Atlantic Canada,.. Isn’t that sad? 4 Provinces and there is only one specialist.. Anyways, I get to this appointment, and he’s 2 hours late… After a comprehensive (I mean intensive!!!) neuro exam by a flock of his students, he finally strolled in. I don’t tend to get along with old fashioned doctors, you know the kind I’m talking about, super full of themselves and its their way, or the highway when it comes to treatment. But I thought, hey, he is my only option… better suck it up and hopes he helps me. We go through my entire history, 7 years in full detail, looks at my med list and tells me “ oh my.. These are hard drugs”… Really? Thanks for noticing. We continue with on with the conversation, discussing revising my diagnosis, from Chronic Daily Headache & Transformed Migraine, but he believes I only have Chronic Migraine. Cool. We continue on, and he decides I need to do a further neuro exam, I stick my hands out in front of me and he freezes. Staring straight at my fingers, face in awe, then smiles. Now, I started to freak out a bit, because a neuro smiling at you always isn’t the greatest thing.  My fingers have always been super crocked and bendy, but whatever, no big deal right? Apparently, yes. Big deal. He starts examining my fingers, toes, and then starts trying to find other weird symptoms I have. We finish, and he decides that I need another MRI, this time with an MRA. He thinks there is either something physiologically wrong in my head, causing my hypermobility, or that I have a hypermobility disorder. So, like I always do, I went straight home and went to the Internet… Reading about a disorder called Ehlers–Danlos syndrome, or EDS. I continue reading about this condition, citing that chronic migraine is a common condition associated with EDS, I continue reading about the other associated symptoms, and I have about 90% of the most common symptoms. Now maybe this is a coincidence, as it wouldn’t be the first time this has happened… But what if?  What if all the doctors that told be I am “perfectly healthy” for the past 7 years were wrong? So going forwards, I’m waiting for my MRI/MRA, and then I will go back to him, and start again. 

 

Thanks for reading guys! Hope you all are having a spoon friendly weekend!