The Community you surround yourself can impact deeply on your health and well-being. This is not a statement I bring you from some well-researched document. I tell you this as a person who has lived a difficult life with Lupus both in isolation and surrounded by a self-made community. The notion of community can be a bit of an obscure one to you perhaps. It was for me. The trap I fell into was mistakenly thinking I had a community, when I didn’t. In fact, I was sustaining myself on satellites. This strategy worked for a time, but inevitably could be said to be the cause of my recurring struggles with mental health. Now, though, I do have a community, many, in fact I was active in the creation of them. Here is what I realised of communities and their role in chronic illness.



Isolation is a demon and it will haunt you in your sleep. After I graduated high school, I moved to Perth to live with my older brother. The relationships I built in the next few years of this transition phase were all individual, resembling satellites in a sense. They were strong bonds made and I regret them in no way and still maintain them to this day. Yet, they were all secular, unresponsive to one another. Whilst individually these relationships were supporting me, they did not support each other, leaving a hollow nook.


Weak and Unidentifiable Communities

My career roles did enable me to interact in a positive way with people. I built and established relationships with trust, respect and admiration. They were supportive, holding and maintaining interests, with interactions outside of our workplace. But they relied on the foundation of work. I ventured out into the great wide work of sports, dabbling in single person activities. Pilates, stand-up paddleboard surfing and yoga. Can you guess what happened next? My job disappeared as I prepared for university. Now unable to afford to pay for my classes. My surfing companion moved away. With Lupus Cerebritis, it was now unsafe to be surfing alone. Within weeks the two feeble attempts I had made at building a community were disintegrating.


My First Real, Solid Communities

It hasn’t been said, but my mental health was not so good from the moment I moved to Perth. My path of self-destruction left no stone unturned. As a young, unreflective person, none of this was clear to me. Not the poor mental health nor the lack of a supportive community being important here. As I began university I developed a sense of belonging, even before I met and knew many people I was seeing and studying with regularly. I had a purpose to be there and this purpose gave me strength to try and confidence in myself. Through my university I found a job and began volunteering. And let us not forget that my physical health was now a frequent event in my life. I was becoming a regular at Fremantle, Royal Perth, Murdoch and Fiona Stanley Hospitals. All of a sudden, I had university, my teaching degree, my job and my health communities to add to my satellite stars.  And it felt good.


The Breakdown

Things in my life were going great, while I was studying. I know it may not seem that way to the casual observer, but I had really strong communities and firmly understood my position in them. The trap that this created was profound, as once again there came a time when this all stopped. It seemed as though I was struggling because of personal loss. When in actual fact, I had been working very hard at establishing my identity around the concepts of me as a teacher and me as a very unwell person with the brain disease Lupus Cerebritis. It only stood to reason that as my health improved and when I ceased attending the mandatory practicum engagements, my world started to fall apart again. The two main communities I survived in broke down and so too did I.


Reparation and My Current Communities

The end of last year and start of this one saw me building better foundations. I had been shaken to the core, thus needed to start from scratch again. This was the first time I actively identified, determined, sought and created my own communities. The first, you have heard about, is Fernwood. The Ladies Health and Fitness Club. Three times a week at present I attend a Low Impact fitness circuit group with ladies varying in age from fifty to ninety-one. Yes, an age gap of somewhere between twenty and sixty years. After our class we (they) make tea and sit around gossiping (definitely them). The second one so far is an art and craft collective. Actually, I made a decision to enhance my abilities in arts and crafts and so take classes regularly on different skills and talents. The collective part is the fact that the studio I learn at host ‘sit and sew’ or ‘maker days’. The beauty of Fernwood is that it is supporting my physical health, and the benefit of the art and craft groups is that I do not need to rely on how well my body is performing on any specific day. I also firmly believe that tapping in to creative avenues is healing for my mind and thus these communities help my Lupus.

The Final Community

The final community I want to talk about is the most important one yet. It is you. This Lupus Life is my community. Everyone who reads, contributes and comments. Even those who don’t. Subscribers and non-subscribers. Without sounding creepy, I can see you all, know you all and appreciate you all. There is so much research and publicity these days commenting on the role of social media on our society. This documentation is supporting the theory that technology, electronic devices and social media are isolating. But there are many people who cannot leave their home, get out of bed or be left alone or unassisted. Personally, I like to think they are the exact opposites of this research. The online community can be an expansive and connecting place. Enabling people with a chronic, debilitating, deteriorating, painful or isolating illness, disease, disorder or health troubles to tell their story, communicate with others. People who would otherwise have no one, can now have someone. Even if they do not want to participate and engage, they can still bear witness and feel a little less like a dandelion seed floating in the wind. You are the final community. The most important community. It is the existence of you, and the input you have that makes a difference. Thank You.

My Thoughts on Community

Satellites are and can be great. I love and appreciate my satellites so, so much. But if you fill your life with only them, then you may find you struggle a bit. Juggling time between these people, as they socialise in their own communities. This left me feeling even more isolated, and my attempts to bring them together failed. They drew me because of traits I was looking for and, having met their communities and seeing how I didn’t fit in, my low feelings drooped lower. I had ample opportunities to integrate into a community at any stage of my life, goodness knows I had all the right attributes before me. My issue was that I did not understand what I was looking for and that a community needed to be supported beyond a singular specific trait. If this trait leaves, how can you be sure the relationships will stay? If you leave, but the rest of the community stays, I guess you need to be sure that you will be okay if the relationships do not follow you out. Understanding what you are looking for and what holds your communities together seems to me to be necessary. My relationships with the older ladies at the gym revolves around attending the same low-stress class. If I spontaneously decided to start cross training, wearing tight clothes and speaking crassly, I feel they may not be as welcoming. I need a community that I can turn to when my body falters thus the arts classes.

I know I will always have Lupus. And I hope that, for as long as I keep posting, there will be my beautiful community of readers. Once again, thank you.

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