Tue | Sep 25, 2018

Living with Lupus: Emily Dixon’s Story

Published:Sunday | May 3, 2015 | 12:00 AM
Dixon: I cancel the pity party once I hear it being set up and put things into perspective.
Dixon: Four days before my 30th birthday in mid October, I sat in my bathroom and my husband, Julian, clipped and sheared off every last strand of hair.

May is officially World Lupus Awareness Month and in honouring the month, Outlook has decided to dedicate this the first issue of the month, to the fight against lupus and, for many, creating awareness. Lupus is disease affecting the immune system in that it speeds it up, spreads and attacks the healthier aspects of your body. Symptoms include inflammation, weakness, swelling and damage to the skin, joints, kidney, lungs, heart, and blood.

Today, we share the remarkable journey of 30-year-old Emily Dixon, who continues to challenge the odds in living with lupus, through determination, support and sheer positivity.

Dixon shares her struggle through her blog, With Peace In Mind, and in her latest post, Catching Up, she reveals the transition of losing her mane and embracing the bare. She also highlights the different side effects of the disease and her battle thus far:

So, what's been happening? To be honest, as it relates to lupus, there have been no dramatic improvements with my condition. My medication has remained the same, although this is not where I saw myself since I started posting. I'm not going to say that nothing natural I have tried is working, because I have not been as consistent with these treatments as I should be.

Last June, I had a medical issue, and this caused a flare up of my symptoms. We use the term "flare" to describe a time when symptoms start rearing their ugly heads and the disease becomes active or more active than before. This was a pretty bad flare and, as a result, I experienced major scarring on my face in the form of a butterfly, also known in the formal setting as a butterfly or a malar rash. The scarring extended to my scalp, cheeks, ears, neck, chest and shoulders, causing dark marks and scaly skin in those areas. My skin is quite a sight!

I was also suffering from fatigue and dizziness. And my hair? Well, this flare took the cake! I think it really, really wanted to know how much I could handle. My hair fell out so much that in about June (of last year), I started wearing scarves to cover it up. Then I tried extensions for the first time in my life. The extensions led to further breakage and patches, so I went back to the scarves and eventually wigs from time to time. I also lost half of each eyebrow.

After weeks upon weeks of thinking about it and researching and meditating and praying, I decided to shave off what was left of my hair off and officially become a bald woman. I was tired of hot scarves and wigs, which caused headaches and were so uncomfortable. I was tired of trying to coordinate scarves with outfits and styling the wigs once they started to wear out. And most of all, when I wasn't wearing anything on my head, I was tired of looking in the mirror and seeing a circus clown staring back at me. I was on the verge of allowing this thing to drag me down to my lowest level and I had to stop it. I figured, I'm confined to covering up anyway. If I don't like being bald, I'll just continue covering it up.

Four days before my 30th birthday in mid October, I sat in my bathroom and my husband, Julian, clipped and sheared off every last strand of hair. I was somewhat freaked out during the process, because it felt so surreal. Afterwards, I got emotional about it because it was such a huge change and it was scary being reminded that things had become this serious.

Eventually, with some extra love and support from loved ones, I embraced it. I started to feel free! I felt like an improved woman (no matter what the whole deal is with the importance of hair) and I confidently took my place as a certified baldy. I had scarring on my scalp so I quickly figured out how to use makeup to cover it and try and "pretty up miself." The scars still show, but I find myself being less and less concerned about them and more concerned with being confident about my baldness.

The love and support has been overwhelming, to say the least. So many times I get, "You are rocking that look!" or "Wow! You have such a cute head!" Some of my little students have said things like, "Auntie, I love your bald head." One of them (after staring at me for a long time) said "You're soooo pretty!" That really made my heart melt. I get all kinds of comments. Not always good, but that's OK. I'm learning how to deal with people, and if I feel it necessary, to educate them about my condition.

I cancel the pity party once I hear it being set up and put things into perspective. My main declaration is I am alive and feeling great! That's more than so many with this disease can say. Why should I go around feeling sorry for myself? I owe it to them, myself, my family and to God to do the best I can with the life I have, giving thanks every lively step along the way. I try to encourage everyone to truly believe they can achieve their goals and make a contribution to this world, no matter what they look like. Baldness, scars and all.

Still, I must be mindful of my health. My issue right now is consistency. I'll be relatively stress-free for a time, then I get off track and take on too many responsibilities and my body definitely feels it. I'll be good with supplements and skin-care products then they run out and I don't restock so I can't know if they're helping me or not because I don't give them enough time. I'll eat really well for a while, and then I don't.

I also end up being more irritable and moody than is necessary and that doesn't help anything. I have recently started an exercise programme guided by a friend online and it is the most I've kept up with one of those things. I have fallen off in the last week or so due to being busy, but I am rearing to get back on track with it when I recuperate a little more.

So, there is definitely work to be done, but I cannot say enough about how grateful I am for all the positive energy I have been receiving and I'm just soaking it right up! It has really helped me to stay encouraged when I do get low about my appearance (because that still happens, of course) and focus on trying to be a better person.

Dixon's honesty and bravery throughout this journey are truly inspiring. World Lupus Awareness Day is May 10, so, while you celebrate Mother's Day, please keep our lupus patients in mind as well, rejoice with those still in the fight and celebrate the lives of those who have lost the battle. Also, for more information and assistance, you can reach out to the Jamaica Cancer Society.