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. 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. Fucking 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 that people with invisible illness choose to wear for the comfort of others, it takes 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 heart breaking.
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% 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 30's 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 had 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 that 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 effect it. It is a messy and complicated journey.
But on May 7th of this year, we will join in the Lupus Foundation's Walk to End Lupus Now Event in Tampa Florida. I have set up a team under the link: http://support.lupus.org/goto/tampabaybeachbums
If you cannot join us in the Walk join us in the Fight Against Lupus by donating at the link above.
Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth; Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same, And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back. I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I-- I took the one less traveled by, And that has made all the difference. -Robert Frost