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Why I Still Struggle to Talk About My Lupus After 7 Years


Seven years ago I started down this journey, this thing… lupus. When I was diagnosed even the doctor didn’t really sit there and explain much to me. Most of the knowledge that I have about this disease has been acquired through relentless reading, seeking and searching for answers. I acquired my love of reading from my mother at a very young age and I am blessed to say that insatiable thirst has never left. My one bedroom apartment looks like a small library as I continue to collect a vast array of literature several of which are dedicated to the seeking of answers to this incredibly frustrating journey, this thing… lupus.

Even after seven years, I still struggle to speak about lupus and how it affects me specifically. There is a thick guilt that comes with the association of each explanation. It is as if I am making some sort of excuse instead of just trying to explain the situation. Even speaking about it with certain family members is a no-go. I feel as though I should just “do better” or “try harder.” I get side comments or off-handed suggestions that maybe, just maybe, I might be blowing things out of proportion. After all, I don’t look sick.

Most people see the “strong” side of me. The side that musters up everything I can to hide the pain, the fatigue because that is what most people want to see, whether they admit it or not. I think that is what stays within the confines of their own comfort zone. The two or more days after, that it takes to recover… those I keep to myself. That way, everyone can stay in their lane of familiarity.

But lately….oh lately, it has been nearly impossible to do what I normally do because for the first time since 2010, I have had to go through chemo again. F*cking chemo.

When I went through my first round in December 2016 I didn’t tell anyone. I had just walked away from a job where I was miserable, so my stress levels were high to say the least. And as I sat in the hospital chair being pumped full of poison, I cried.

What people don’t realize is that all the masks people with invisible illness choose to wear for the comfort of others can take a toll on their own well-being. The stigma attached to being “the sick person” in the room is real whether people will admit it or not. Not everyone is designed to deal with long nights in the ER, restless bodies in pain next to them in bed all night, strict and often frustrating diets, canceled plans, etc. Most people think they are, but when the shit hits the fan, very few people are left waiting in the wing. It is disheartening and outright heartbreaking.

When I had my second round in January I at least got to do it from home and stepped out on a very narrow and scary ledge… I actually told a few friends. Telling people was almost as scary as going through the procedure itself. Would it matter? Who would show up? Who wouldn’t? It didn’t go 100 percent according to plan, but in the long run it was worth it. The friendships forged through the experience have been invaluable. I now have two months reprieve before my third and final round. Hopefully, it will squash this wicked flare I have been sludging through.

My pride has been also put into check more than I will ever comfortable with. I am currently single and in my 30s and with that comes a high level of independence. Having someone help with the laundry because I have thrown up all day, or bring me food because just the thought of traversing the grocery store wears me out are all things 1. I have never done before 2. I am still struggling with because of pride.

That familiar guilt creeps in and I have not yet figured out how to just accept the help without it. Until then, I will cherish the friendships, the ones that really matter. The ones that don’t judge the uncontrollable situations and still choose to love me because lupus does not define me, or my purpose in this life, but it does affect it. It is a messy and complicated journey.

This thing…lupus.

This blog was originally published on The Better Half of Me.

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Thinkstock photo by kotoffei