One of the hardest things about having an invisible illness is getting people to understand, even my people. They’re not going through what you are so it’s difficult for them to empathize. But I give them credit for trying and that’s why I think the best thing for me to do is open up.
One of my biggest pet peeves is when people try to convince me I look great, or they don’t even notice the changes, in a genuine effort to help. I appreciate it, but please do me the courtesy of being honest with me, allowing me the opportunity to be honest with you.
My face on Prednisone:
At the time this was devastating. Again vain, but that’s the reality of my mind (25, female, single…) As it became puffier and puffier I tried to make jokes and poke fun of myself in an effort to make light of the situation. This may have been a coping mechanism but I find humour the only way to get by in shitty situations (see what I did there?) But then there was my Dad, along with several other compassionate friends of mine who would say things like, “I don’t notice a difference,” or “Your face isn’t puffy at all.” Thank you, but that doesn’t make me feel better. In fact almost makes me feel crazy like I’m delusional when I look in the mirror (Was my face ALWAYS this big??).
And then in one of my efforts to return to work, a parent very bluntly asked, “Why does your face look like that?” Well let me tell you…..And here is where I could vouch for myself and explain what is going on. No I didn’t gain 40lbs. No I didn’t I stop wearing make-up. It’s a side effect and it will go away. It may sound like she was being rude, but she was curious, and concerned and I appreciated it more than the usual efforts to comfort me.
What I would rather:
I would rather people acknowledge the changes. I would rather people say “Yes your face is swollen but we still love you,” or “Yes I see the side effects but don’t worry because it’ll go away,” or even better, “Let me help you contour your face to make it look less puffy.”
Finally after my face went back to normal my Dad actually said, “Yeah it was so puffy it was actually really weird to watch because your body was so small.” About time.
This same story goes for my weight loss/gain, my hair falling out, my skin becoming pale or filled with acne, or my eyes sunken in with bags under them. I am sick and I know it. It’s better if you know it too so you can ask those hard questions, and I can answer those hard questions. (i.e. Why does she spend so much time in the washroom?).