I’ve heard this phrase more this past week than I’ve heard it in a very long time or maybe I’m just more sensitive to it. Last week I had cataract surgery which isn’t common in 25 yr olds at all. This is a side effect of one of my lupus medications. It’s one of the few medications that have helped me. Dr’s don’t like their patients to be on it long-term and I’ve been on it not quite 4 years.
We’ve tried getting my body off it, but then my inflammation markers sky rocketed and it causes all sorts of issues. I wish there was another medication we could try, but at this point there really isn’t. Every day I take this medication, every day I willingly accept these risks as the risks of not being on it are much worse.
For surgery, that was already a rough day for me as I didn’t want to be there doing this. Plus it was no food or drink after midnight and I somehow had the last appointment of the day. That royally messed up my medication schedule for that day. The waiting room had those harsh lights that trigger my lupus symptoms.
After waiting 30 minutes, I was getting antsy and the anesthesiologist called us in the conference room to tell us they’re running kind of behind but they’ll start pre-op “shortly.” I’m usually pretty good at keeping myself together, but at that point I just lost it and started crying.
The anesthesiologist was maybe trying to comfort me and said but I understand….All these people in the waiting room are in the same situation you are. All of them were at least 2 times my age and lots more like 3 times my age. That was not what I wanted or needed to hear at that moment.
I said to her are all of these people 25 years old with 2 potentially life threatening illnesses too? Do they all have Sjogren’s Syndrome, Celiac Disease, Lupus, autoimmune thyroiditis, and an immune deficiency? Are they here because of a side effect of a medication they needed to stay alive?
She said oh honey I understand, you’ve been given a rough hand. I responded with have you been forced into a medically induced retirement at 25? Yeah didn’t think so, so how could you possibly understand…
I have to admit this wasn’t my finest moment and anyone who overheard this conversation probably thought I was some kind of monster. The truth of the matter is I’m only human and doing my best to keep myself together.
They have no idea what I go through on a daily basis. They aren’t the ones who get I don’t knows when they see specialists. They aren’t the ones taking handful of medications every day. They aren’t the one trying their best to live life despite their crappy situation. They aren’t the ones who recently had to donate the vast majority of their clothing as it contains latex in some form or another.
If my doctors and medical science, doesn’t understand, if my family doesn’t understand and if even I the one who lives with this daily doesn’t understand, how can she possibly "understand?" Every day I don’t understand why this happens, why my body is so dysfunctional, how one person can be so sick and how those that are healthy just waste the gift that is their health
I wish their were answers to these questions and that she could truly understand what it's like to walk a quarter-mile in my shoes. Doubt many others could do it, but then only then could she say she even kind-of understands. .
