I am coming to the end of my twenties in the next few months. I want to take a quick look back on living my life with this illness called Lupus. Talking about my journey on this blog is always in a reflective activity I know. And much of what I right reflects on the same stories, or at least overlaps to some degree. This is intentional, however, when you plan to write a reflection, how do you do it so you aren’t just rehashing the same old information? If you are willing to stick with me and let me try, I promise you won’t be bored.
The Big Move
The last few weeks you have read how I have been cared for, or supported (thanks ma for that term) by my parents because of my Lupus. You have read from both sides, what I felt and what mum has felt. You haven’t heard from dad as he was moving furniture. Why moving furniture? When I enrolled at university five years ago, my parents felt I may need help from them while I was studying. Then came the illness and they were at a cross roads. Should they be in Lake Grace, or should they be caring/ supporting me full time in Perth? They deliberated with this question for the second half of my twenties and, while I pretended not to notice, inside I think it tore them apart. They chose Lake Grace then, but they are choosing Perth now. That was an incredibly hard decision for them, please don’t judge.
Me in the Spotlight Losing my Independence
I insisted on my independence through my twenties, studies and trouble with Cerebritis, but that didn’t stop their very regular visits. The two got so used to being up here, I think they decided when the timing was right for them and me that they would move up here. So long family home of my youth. So long, Lake Grace, you nifty little place of tranquility, reliability and strong community bonds. Welcome, My Parents to outer city living. They will move up here in the next few months, at the end of my twenties. When I say I’m ‘losing my independence’ let us be real. I gave it up willingly years ago. I do not resent them, nor am I worried about how living with my folks will ‘affect my social life’. I am a young adult who lives in Perth. I am not the first person in their twenties to enter this arrangement and I won’t be the last. I am not ashamed or resentful. They are two amazing people who have helped me through the worst years of my life without a word of complaint. I am honoured to know I may be able to repay this in some kind.
So long University!
That is right folks, I am graduating. Six months earlier than expected and with a different degree than hoped, but I am university educated and live in a country that will allow me the opportunity to use this knowledge for good. My last assignment was submitted last week and I have one exam in mid-June. But that is it. The only scary thing is leaving a comfort zone that included numerous sleep-ins. Look out world for Jessie, Bachelor of Arts in Education Studies extraordinaire!
Goodbye Twenties! I’m Turning 30!
That’s right folks! In the middle of August I will be recognised as having walked this earth for 3 decades! I want to celebrate but I am unsure how. I want to formally acknowledge how adamantly and successfully I am staying on this grounded on the third planet from the sun. I want presents!! I mean…hugs (hehe). But most of all I want to show that I am leaving an impact. That my words have helped some people. That my whinging, groaning and social media assaults have been for a greater purpose than pissing off my folks. This brings me to my last and final comment. I am asking, begging, pleading you to show you are listening and you care (not for me per se but for the cause). Details are listed below on how you can help.
What I Have Found Out About this Illness, so Far
Lupus gets so little recognition because it is not physically or visibly evident in the many famous or ‘everyday’ people. With little recognition it gets little funding. The small amount of funding doesn’t draw big game in the medical industry to research or work in this area (immunology). So, whilst Lupus has been around for so long it still isn’t being treated with its own medication. There is no definitive proof a patient has it, only some possible ‘ifs’ and ‘maybes’. As you cannot see it, and only some tests some times can kinda say you have it, many patients are treated like exaggerators or hysterical women. As the illness is so prevalent in women it is definitely ignored, or symptoms are downplayed. Again comes the hysterical women stuff. We, as sufferers, are ignored, set aside, suggested to be hysterical, hypochondriacs or medication frauds. We become demure. We downplay the extent of our symptoms to friends, family and the medical industry. Our illness is noted to often have an onset with the start of puberty, childbearing years or changes in our hormonal balance. Again, we are seen as weak, hysterical women who are fretting over nothing or natural biological changes. A piss week excuse if ever I have heard of one, pardon my language.
Why I Am Here
I write because in the United States of America Lupus is a prominent disorder. Genetically it is said to be common in Africans, African Americans and Asian. I guess that is why it is rarer here. And why there is less support for people who have it here. I want to change that. We need our own local voice. I do not want to seem presumptuous in taking the spotlight on this one, but I decided if no one else was going to be the face and voice in Australia, then I would have to do it. The time and money I contribute to my shameless self-promotion, on Instagram, Facebook, Twitter and this blog, are all given freely. I pay out of my own (student allowance) pocket to push the online marketing. I give 2-3 hours a week in writing and more time and effort in designing and scheduling my ‘bursts’. I also mentor, both online and in person many young and middle-aged people in need of answers or guidance about this illness and many other autoimmune and invisible illnesses. No one pays me, no companies sponsor my ads (I don”t have ads on my site).
How Can You Help?
I don’t want your money or presents, seriously. But what I do want is for everyone who reads this to donate to The Lupus Foundation of Western Australia. It needn’t be much, $5 is fine, more is terrific. You can also offer your energy as a volunteer if that suits you better. You can also talk about it with people you meet, or host a luncheon or afternoon/morning tea for it. Just…get the ball rolling. Do something. For me as I leave my twenties and for everyone out there of any age who feels lone, isolated, depressed, because their body is intentionally attacking itself. Below is a link to the donate and volunteer website of Lupus WA. Please help.