Body Conscious

Let me start with the good news. I'm still alive and well enough to go about my daily tasks. I have energy most days and I continue to enjoy life. The bad news: This lupus thing is really not an easy road. Every time you think you understand it a little better, something else comes out of the blue to confuse and throw you off, even if just slightly.

I was diagnosed with Lupus ten years ago, an autoimmune disease where the immune system sees its own healthy tissues and cells as foreign and attacks them in an effort to "save" the body, but instead wreaks further havoc. It means that anytime you get sick or introduce things that the body is not sure about, it can develop into a flare affecting various organs of the body. It means that allergic reactions can increase and come and go as they please. Like how sometimes I can wax off three slices of pizza, no biggie. The next time I try, I break out in a rash after eating just one. It is important, as with any chronic condition, to find what works or doesn't work for you and maintain a healthy lifestyle with certain dietary improvements, lots of rest and adequate exercise. It also helps to have a positive attitude because it can get real!

My "realness" has manifested in my skin for the most part (thankfully but also annoyingly). With severe hair loss over the years; scalp, facial and upper body scars; rashes that come and go as they please; and consistently sore ears - it is clear that lupus is still a very active part of my life. While I've never been hospitalized, I've also never been in remission and off medication and I still feel the effects of this unpredictable disease. And it has changed me in more ways than I ever imagined.

It has made me think a lot about image and concepts of beauty that our society has placed upon us. I was never an "all about looks" kind of girl, ensuring that from head to toenail I was "on fleek." I enjoyed having low maintenance hairstyles (locks at first then very low hair), not wearing much makeup and definitely not fussing over a couple skin blemishes. However, nothing could have prepared me for what lupus would eventually cause. First came the acceptance of less and less hair until I reached almost 100% baldness. Then, even worse, came the very visible scars on my face, neck and shoulders. I chose to be officially bald and wear my baldness with pride in late 2014 and that part of my journey was empowering. But, it had not eradicated the distress that can come with such a drastic change in one's image. Earlier this year was particularly rough for me because I decided to allow my hair to grow just to see if anything had changed; if, by chance, my follicles were again healthy and ready to do what follicles do best. After months of patiently waiting, it became obvious that it was not meant to be. And anyone who knows me knows I hate wearing wigs and scarves on my head, so it was months of that discomfort before I decided to go bald again. To be honest, I felt much better after shaving the little that was trying to grow, because it was far more difficult for me to watch and wait for something that was obviously not going to happen than accept what I had already grown accustomed to. It also helps to hear that I wear it well ;-)

But...and there's always a but...my skin. My skin is my greatest disappointment, even for someone who was able to accept the changes her body has been going through. The face people see on a daily basis is not the face I wake up to. And while it doesn't take too much to get myself looking "acceptable," the evidence of illness stares me in the face a little too regularly. That constant reminder - you are not well and your face shows it.

They always say "whatever doesn't kill you, makes you stronger." And I think it's true. I have gained a kind of strength through this journey that I hadn't thought imaginable. And I'm often told how strong I am and what an inspiration I am because of what I've been going through. But in all honesty, I was not feeling strong or inspiring earlier this year. I think I got into a prolonged low period and I started feeling like a fraud. I continued to smile through how I truly felt so that no one would give me the pitiful "poor soul" look. And I think that was one of my biggest mistakes throughout this process. While trying to be that strong person, I was not acknowledging my weakness. Not allowing myself to be upset about how things have turned out. Not accepting that I'm still human and I'm allowed to feel disappointed and upset and that all odds are against me. Not allowing myself to say that lupus sucks and that sometimes I hate who I see in the mirror. That for once, I just want to feel what it's like to get up, get dressed and go on my way - no makeup, no insta-brows, no extra sunblock, no long sleeves, no remembering where I left my umbrella last. Just to be normal. 

Photo Credit: Tori Haber Photography

It has been in accepting these weaknesses, these true thoughts -  the un-inspirational not at all strong side of me - that has brought out true strength. To acknowledge them, recognize that I cannot wallow in them, identify and give thanks for the blessings I do have and get on with my day with an extra bounce in my step. 

And I am truly happy. I really am. I would still love to have clear skin (I mean, who doesn't?) and I'm trying all kinds of things to achieve that. But for now, I have accepted that this truth of mine is something I have to deal with while still achieving my life dreams - none of which have to do with having clear skin! And while it can still be painful to be reminded of this condition when I look in the mirror daily and shave my head; rubbing various concoctions on my skin; and carefully applying layers of makeup to my face, I will be approaching my 32nd birthday (October baby! Whoop!) with joy to still be living this beautiful life.

October is supposed to be Lupus Awareness Month. This month, Ocean Boulevard - a company providing accessories (ties, tie pins, lapel pins, pocket squares, socks, etc.) and encouraging all to "Elevate the Status Quo" - has generously dedicated to contributing to lupus awareness in Jamaica using proceeds from the sale of one of their purple style cubes (purple is the official colour for lupus). Thank you Ocean Boulevard! It's a great reminder that even if your image is tainted in some way, shape or form, your accessories (or those of the one whose arm you're on ;-)) can be that sure confidence booster. I can say I'm one lucky girl to have someone who accepts me and calls me beautiful, scars and all. And when we're ready, we clean up real nice! ;-)

Lapel pin provided by: Ocean Boulevard