It's been purple this and purple that...now what?!?!

It is the final day of May and Lupus Awareness Month is almost at it's official end. So what next? Well, lupus still exists, so as far as I'm concerned, the awareness will not end here. However, you might be feeling as if nothing was really done this month. I would disagree. It has been a very productive month. After all the fun purple nails and finding anything purple to wear, making the "L" sign and taking pics, wearing purple ribbons, sharing facts online - a very necessary conversation has started and will continue. I keep saying it - The support has been AMAZING! Some of the things I've heard people say show how much more educated they are about the disease. They are more willing to share their own stories of triumph and hope and sometimes distress, whether lupus related or not; knowing they or their loved ones are not alone in this fight. More people want to get involved in sharing information, offering interviews, support through benefits, making donations, etc. The activities were not as large-scale as hoped, but, guess what? There's always October! This is when Jamaica, and more specifically the Lupus Foundation of Jamaica, recognizes lupus awareness. So, we can treat May as the warm-up for October. Now that we have more supporters on board (that means you ;-)) we will be well equipped for further awareness later on in the year and to do some serious fundraising. Our goal is to meet some important needs:

We need money
Like any other chronic disease, lupus can be very expensive. From the doctor's visits, to the blood tests, to the medications, hospital trips, to simply getting to the doctor for some; it can really be overwhelming. Not to mention the fact that the disease leaves some so debilitated that they are unable to work. Some have families to care for and this added stress can make the lupus worse. We need to have a good fund going so patients who need that extra dollar can benefit. When we have healthy people, we have a more productive society, so this benefits us all. It would, of course, need proper regulation so that no one abuses the opportunity, but I feel it's a very necessary step. We also need money to help support lupus research. I have not heard of one drug on the market that is specific to lupus. Of the medications I have taken, one is a steroid, one is an antimalarial, one is for ensuring your body doesn't reject a new organ and one was a cancer medication. WTH? I have never had malaria. I have never had an organ transplant. I don't have cancer. Because the disease is so complex and attacks so many different systems in the body, there really is no one thing that helps. Good diet, healthy practices and proper management of stress is key, of course, but in some instances, that is not enough and research needs to continue in order to change that. On that note, however, we need the lupus population to be better educated about their disease and how a healthy lifestyle can significantly help. As much as information is at our fingertips these days, some are still not aware of the benefit of natural practices to maintain good health on a daily basis.

We need insurance/NHF support
Earlier this year, a lupus patient started a petition on Change.org with the title "National Health Fund Jamaica: Please add ‎Systemic Lupus Erythematosus to the List of Covered Conditions under the National Health Fund in Jamaica." So many of you signed that petition and we are eternally grateful. The jury is still out on that one I suppose, but I am hoping something comes of it soon. As it relates to insurance, it seems that because there is a lack of understanding of the disease, no one wants to insure us. Not even in policies where you actually start a savings account towards your health and then get the extra benefits, are we eligible for. I must say that my research in this regard is limited, mainly because it is distressing to be constantly turned down for insurance. So, I'm not going to pretend that I've tried everything possible, but I'm not the only one who is having a hard time with this. Lupus does not have to be a death sentence. I have never been hospitalised as a result of the disease and I still get turned down. To us, it feels like lupus is not "popular" enough to be considered worthy of extra help. It doesn't seem fair. 

We need a more all-round approach to our treatment
From my other posts, you should know I'm an advocate for natural health treatments. They have proved worthy time and time again for so many people and, at the end of the day, it can't possibly hurt for us to attempt a healthy lifestyle. Now I'm not saying we should all jump on the bandwagons that have been rolling through the internet, whether it is all raw, gluten-free, eat right for your type, acupuncture, only eat upside-down wearing a hat on your feet! You find what works for you. However, it would be awesome if we could find more ways to marry western medicine to alternative treatments. Medication has its place in many instances - there's no denying that. But it is discouraging at times to encounter doctors who are not willing to look into natural practices or simply proper nutrition, in an effort to understand some of the other things patients are trying out. Maybe there is more to it than I know in terms of how they can compromise their own practice if they are not experts in alternative fields. However, brushing off other methods as potentially ineffective is a close-minded way of guiding us. In a perfect world, all healthcare workers - western and alternative doctors alike would come together so we can optimize good healthcare. With the complexity of illnesses these days, an all-round approach is key, in my opinion.

We need a more compassion
I spoke with some other patients about how others around us can help us cope.

More understanding in our work environments:

• reexamining healthcare policies regarding sick days and disability policies
• there seems to be more compassion towards illnesses that are better understood; once it is not understood, we are simply making excuses
• the stigma that we won't be able to function in the workplace as a result of the illness needs to go - far too often there's a denial of employment or judgment when we are already employed
• exploring more flexible work times if possible or a work-from-home situation when necessary

Family members and friends have a part to play too:

• become aware; do more research regarding our symptoms, limitations and concerns in an effort to help us ease the pain we may endure
• simply be there, listen and offer comfort when possible 
• become involved in our attempts to spread awareness; your small part could help make a huge difference
• instead of pointing out problems we are already aware of, find ways to assist when possible, such as "Do you have dinner tonight?", "Do you need help with the kids today?" or simply "How can I help?"

Things we would love you to stop saying:

• "I know someone who died from lupus."
• "You are just being a hypochondriac/exaggerating."
• "You need to cut back on your stress"/ "You need to rest more"
• "Stop claiming lupus"
• "I know people with worse things"
• "What stage lupus do you have?"

These are just a few of the aggravating things we hear daily. For some, we know it is coming from a good place and it is sometimes hard to understand why it might not be a welcome statement. However, if it is not helping, let's try to curtail it. Even I have to watch what I say sometimes. My way of dealing with my condition may not be the same as another and I must respect that and find other ways to assist.

So as we say goodbye to May 2015, I am by no means saying goodbye. There is so much to be done and I am uber excited about what will be happening. And this is not just about lupus, or any one person who has lupus. This is far bigger than any individual story, whether of sorrow or of triumph. This is about us coming together as a society in the name of good health. Going back to basics and trying to reconnect with our bodies, minds, and spirits. This involves us learning about one and another and encouraging compassion and understanding. We are all in this world together. Let's make the most of it.





This is just a small percentage of the support shown. Awareness came in all shapes, sizes and ages... Take a look: