Since the beginning of my diagnosis I’ve been hearing how important it is to advocate for yourself with your medical professionals. I feel sometimes, we put so much trust in them, that whatever they say goes.
I have not always been the best advocate for myself. Sometimes, I leave situations thinking “I should have spoken up.” I’ve felt that way in situations not even pertaining to my Desmoid. I just tend to stay passive and not ruffle any feathers. I also feel a bit of intimidation when it comes to the medical field. I, obviously, don’t know anything in comparison to the Dr’s who care for me so who am I to speak up or question their decisions?
I’ve slowly been getting better at advocating for myself and letting people know when I am uncomfortable or when something is concerning me and recently I learned that it can be almost detrimental if you don’t speak up for yourself.
At my very first MRI I was ordered contrast. Contrast is an ink like substance they administer via IV that lights up the spot in question. It just allows the Dr. a better look. After my MRI I noticed a giant hive on my chest. I figured it was a combination of the stressful time I was going through or the nerves I was experiencing from my first MRI. I did mention it to my mother and husband but we all kind of thought the same thing that it was nothing. I did, however, notice that even a day or so later I would get hives when I was upset and that was out of the norm for me. I’ve never broken out into hives before. Then, they were gone and I didn’t have them again.
Fast forward to 3 months later and my second MRI I was, again, scheduled for contrast. The nurse who was setting me up for my MRI was asking the normal pre-scan questions and asked if I experienced anything out of the norm from my last visit. I jokingly told her about my hive and nerves. She wasn’t joking, though, and made it very clear that was a little cause for concern. She said she wanted to speak to the radiologist about it but she was pretty positive they would not continue with contrast.
Come to find out, my hive was a mild reaction to the contrast and had I not spoken up I could have had a much more severe, even life threatening reaction in the machine! That never even crossed my mind (like I said earlier, I know nothing about the medical field). I am so glad I spoke up! I wasn’t going to even mention it thinking it was a silly thing related to nerves and it ended up being a good thing I did.
Not that I advocated for myself in this situation on purpose but it truly taught me the importance of transparency when it comes to these appointments and treatments. Our bodies will always tell us something is wrong whether its just a feeling in our stomach or a more obvious sign like a hive. Do not take those signs lightly.
Speak up. It’s better to hear “that’s completely normal” than to hear “this could have been prevented.”