I’ve always been the person who thinks that if pictures of your drinks for the night, memorable club snaps, and smoking photos make you happy, go ahead and post them. But I’m not a smoker or a drinker, or even a promiscuous model, so when I was messaged this weekend to take down my picture from Instagram, I was extremely confused.
My picture was of a messenger bag. With the HypoPARA Association logo on it.
The HypoPARA Assoc. is an association that holds annual conferences and distributes countless amounts of information to patients with hypoparathyroidism, a rare disease that makes the patients a walking calcium deposit. You can Google the association or the disorder, but in a nutshell: my parathyroids don’t make enough hormones, which are needed to distribute calcium throughout my body, which results in denser bones and unneeded calcium in my urinary tract. Calcium is needed for muscles and nerves to work properly, so patients commonly have tetany, muscles cramps/spasms, seizures, nerve tingling/paralyzation, kidney stones, renal failure, brain fog, heart defects, and basal ganglia calcification.
Back to my story: so the conference was in my home state and I was super excited to go. I took a picture of my messenger bag and lanyard, and posted it the night I came back home. The next morning, I get a text message from a “concerned” family member asking what the association was about. I explained, and she replied, “I’m glad you had fun, but I think you should take it down. You shouldn’t be displaying your condition like that, you’re lucky you look so normal from the outside. I don’t mean to make you mad, but no one wants to be with a sick girl, and even then, I think you’re exaggerating on the medication you have to take (Note: I used to take a total of 15 pills a day, not counting pain and allergy meds, but a new change in my prescription has me off of 11. The replacement is a very high dose of the same drugs, but in a powder formation). I will be praying for you.”
Now, I understand this member means well, but I do wish that, if they understood their comments would upset me, they just not text me at all. But what got to me was not the comments on my medication, but the “you’re lucky you look normal,” and “no one wants a sick girl.”
I actually think it’s a bit of a curse to look okay. Because I do, I’m expected to act and be normal, whereas if I looked “sick,” I would be treated differently. I don’t want pity, but I have nerve, muscular, AND skeletal pain. Sometimes, I can manage it, but the days I can’t, I will be slower, and I need the people around me to understand so I can prevent hurting myself.
Plus, I understand that most people do not find “sick girls” to be attractive. But you know what? If a guy doesn’t want me because I’m ill, I don’t want him either. That means he won’t take care of me, help me during my lab tests/scans, or try to find information when I have a calcium crash, or worse, a tetany episode.
But I’m not the only one. There are thousands of patients out there with a chronic illness, who look normal, but are barely functioning.
So no, I’m not taking down my picture. I am happy and proud of it. It brings me great memories of the conference, and reminds me that I’m stronger because of my illness.
So please excuse me, dear family member, as I ignore your plea. But I will never excuse something that makes me, well, me.