writing off my disease
By: Fela M'tima
FELA: Hey Lo-arna! Let's begin with what you have been diagnosed with, your age, and where you're from!
LO-ARNA- Thank you so much for having me! I'm 31... for the next month anyway (ahhh!) and I have endometriosis.
FELA: As a writer, how has having an invisible illness inspired your writing?
LO-ARNA: Having a creative outlet is to me is almost an essential part of battling an invisible disease. Sorry, I have to say disease. The word illness bothers me because illness to me suggests you'll recover.
I've written since I was 8 but it wasn't until my health was at an all time low I decided to finish a novel. Before that I had the bones of many stories scattered across various USB drives. I released my novel one week after extensive excision surgery, it helped me to focus on something other than my body and writing still does that for me now.
FELA: I actually like your reasoning behind using "disease" instead of "illness". I'm glad writing helped you after that surgery, writing can be such a healing expression. Do you find that it has it helped you escape the reality of being sick?
LO-ARNA: Yes! Definitely. It draws me away from the pain and gives me purpose. Plus it just kind of clears out any cobwebs lurking in my brain which makes me feel better overall. Writing is detrimental to my health!
F: What symptoms do you deal with on a daily basis and how are you managing them?
L: It ranges daily.
Through physio sessions (physical therapy) I've learnt the difference between muscle tension pain and "endo pain," so I make sure I do my exercises every day the physio gave me because that causes a lot of the pain in my lower back and my legs.
I started listing my symptoms but we would be here all day, let's just say pretty much all the symptoms you see listed on an endo brochure. Sometimes all of them in a day, sometimes just a few and sometimes I even get lucky enough to get a week off from all. Occasionally two weeks. I've just learnt to embrace the good days and not beat myself up on the bad days. How amazing does a good day feel....
I have cut out a heap of foods that inflamed my pain and I make sure I walk every day. Sometimes I double over numerous times, sometimes I think I won't make it home but I do it every day. Whether it's a high pain day or not.
F: That's amazing that you push yourself to do that, I personally know how hard it can be to do the simplest task such as walking sometimes. Has being sick ever gotten in the way of your writing? Do you ever find it hard to write when you're not feeling well?
L: Sometimes it's a challenge to write when headaches are bad, energy is low and pain is relentless but I always try to write something. I've forced myself when I know I need to write for my well-being. And just strapped a heat pack to my back and my stomach while I sit in the computer chair.
F: Speaking of your writing, tell me more about your writing project "EndoLife". What is it going to consist of and how can women be apart of it?
L: I'm excited about EndoLife. The idea came to me during March when I featured a lot of local Perth endo sisters on my blog for endomarch. They were all so brave telling their stories I decided I wanted to make that bigger.
EndoLife will feature more women's real-life stories, I want to consult my physio because she has changed my life and I am baffled why physio is not automatically part of endo treatment, through her I've become so much more in tune with my own body and I want that for every endo woman. So I would love her input in the book and would love to include some tips and facts too. I think it would be a fantastic resource for endo sufferers to give to their loved ones, so they can maybe learn more about endo and maybe then, provide the best support they can. I am constantly on the lookout for women who want to be a part of this project.
F: I'm excited about it too! I'll attach your site so women can reach out to you! Can you explain some positive and negative ways having Endometriosis has affected your life?
L: Meeting wonderful women also with endo has been a massive positive!
Learning more about my body and my resilience. Obviously the one big negative is having endo at all. I kind of miss the days I was on the pill and more or less oblivious to what was going on inside my body. I think once you accept you'll never again be the person you were before your diagnosis you can move forward in a positive way and deal with your disease best you can.
F: Has having Endo affected your work life as a Deputy Editor? How do you work around having an illness?
L:I need to update my bio on my website, I'm not working as Deputy Editor anymore. They had a staff reshuffle, I found it pretty easy though as it was all online based so I was able to work in my trackies or pjs if need be.
I've been approached to be Editor for a similar project which is super exciting!
F: That is so exciting! I wish you the best of luck with that! As I wrap up, I do want to thank you for sharing your experiences with Endo and your plans with EndoLife. What advice would you give other writers who are battling Endometriosis?
L: Write when it hurts, get out in to the sunshine and enjoy the fresh air, scribble in a notebook.
You are enough.
You are bloody brilliant.
Check out Lo-arna's website here.