The Courage to Accept Change

I was at the end of my second year of university (University of the West Indies, Jamaica) when I was diagnosed with discoid lupus. At that time, I was studying psychology and was an active member of performing arts groups doing singing, dancing and playing cello. I WAS ALWAYS BUSY. If I wasn't in class, I was studying or doing coursework or at some rehearsal on and off campus. My family and close friends were always trying to monitor everything I was doing because they felt it was too much. I remember one time preparing a speech so that I'd have an answer as to why I had taken on preparing for yet another dance show to assist with a friend's final year project. I knew their hearts were in the right place, but I loved every minute of my haphazardly-scheduled and hectic life. It was exhilarating. You can imagine the shock when I told them at the start of this summer that I was taking time off and would not be working. Almost all of them said "Reeeeeeallly?? You??" Throughout this journey, they have constantly been checking up on me to make sure I'm doing everything to get better, so I think they're happy to know that I'm finally listening to them and "un-busying" my life as much as possible.

There are a lot of changes that have to take place and that will inevitably take place if you have this condition. As an autoimmune disorder, the immune system becomes overactive once it feels the need to take action. As a result, white blood cells produce antibodies that feel the need to destroy your healthy cells. This means it is very important not to get sick. If a virus is going around, don't catch it! Easier said than done right? I was never one to get sick very often so I've never really taken extra precaution when around people who are sick. In my profession, I have to be in close contact with children who, at the drop of a hat, might sneeze on you (the darlings). It's sometimes a matter of retroactive control, e.g. having hand sanitizer, disinfecting areas that they have touched or simply washing hands after contact. There are some who have to go to the extent of wearing gloves and face masks to protect themselves in public areas. Don't assume they're bleaching - they might just have lupus.

Another major change is limiting your exposure to the sun because of what is called photosensitivity. How I now understand it, when your skin is exposed to the sun, certain proteins are produced and the aforementioned antibodies rush to the "rescue" to fight them off. This leaves a rash on your skin. I get what's called a butterfly rash across my nose and cheeks. Sometimes it extends as far up as my forehead leaving scarring and as far down as my jaw. (Makeup tip: The best coverage for me so far has been Iman concealer, foundation and powder. Confidence tun up!) 

But, it's not just about the sun. It's about exposure to ultraviolet rays, namely UVA (which ages) and UVB (which burns). Now, this is some info I got recently. I had always thought that once I have on sunblock with a high SPF, cover my skin and try to stay in shaded areas, I was good to go. However, SPF only protects the skin against UVB rays and not UVA. It's important, therefore, to use broad spectrum sunscreen whenever exposed to UV rays. Maybe you can pray for a cloudy day? Not really...the UVA rays still penetrate through the clouds and can affect the skin, so cover up! Other ways to protect the skin are making sure your car windows and even house windows are tinted; wearing hats and clothes that fully cover the skin; using a conditioner with UVA/UVB protection (I did not know they had that!!); and avoiding fluorescent light (UVB rays) and photocopy machines (UVA rays) as much as possible.

This part is sometimes really difficult for me. I hate hats, I hate carrying around umbrellas because I leave them everywhere and it's not always easy to find long-sleeved clothing that is affordable, looks good and still keeps me cool. I remember being on holiday with my mother and I had been using an umbrella as protection. A man rushed up to me and (in french) said, "But Miss, it's not raining!" People decide that you're being strange because their worldview is different. Many times I have to remind myself that this is for my own good and I have to do what's right for my body, no matter what anyone else may think. So if I'm outside in the middle of summer IN JAMAICA, covered from head to toe, smelling like sunblock (love that smell by the way), in a hat and holding my umbrella when it's not raining...deal with it!

With all the changes (and there are many more to talk about), support is such a pivotal part of treating lupus (and any other condition, I'm sure). It breaks my heart when I hear of patients who say they have no support from family, spouses or friends because they just can't handle the intensity of the disease or they don't fully understand it well enough to deal with all the changes. You hear of those who get left by significant others who think they're just making excuses; those who lose jobs because their bosses can't understand how they can be so tired all the time; the friends who pull away because they can't do all the fun, outdoor activities they used to be able to do. People continue to judge because they've decided your hairstyle doesn't suit you not even thinking that maybe most of your hair fell out and you have no choice. Because of medication, your face can change and your weight might fluctuate and you get told that you're letting your body get out of control (true story). It's tough and you have to develop a thick skin. You also have to surround yourself with people who will lift you up. The ones who tell you that no matter what, you are beautiful; who will try the new vegetarian place with you because you want to cut back on meat; who will do some yoga with you because you want to de-stress; and those who will simply be there with a shoulder to cry on when it feels like it's becoming too hard to bear. Those people are out there and I feel so incredibly blessed to have an amazing support system that has been by my side and continue to walk this journey with me.