Embracing the good days.

Good days, bad days.  We all have them, in varying proportions.  I was on a run of bad days for a good couple of months there - then my rheumatologist returned, we were a bit up and down for a while, and then we finally started to get somewhere.  

Today was the first day where I could honestly say I felt "good" in a very, very long time.

Today, I was published on Mamamia - I'm so proud and honoured to have my piece included on the site.  Mamamia describes itself thus: "On Mamamia everything is up for discussion  – from pop culture, politics, body image, food, motherhood, feminism to fashion and celebrity. We like to have a laugh AND a cry. We’re smart but not precious. Interested and interesting.  We have a community of  tens of thousands of people who are actively engaged and articulate. Just like a real life discussion with a group of women, you never know where the conversation will go. You also never know what’s going to be published on Mamamia on any given day. Serendipity is key."

Anyway, Mamamia allowed my piece to be read by a far wider audience.  Some of the comments made me both immensely proud and overwhelmingly emotional.

"Thanks for sharing your story, the more difficult a story is to share the more important it is to do so. My Dad makes walking sticks, and before he did he never realised how important they are to people who can not be without one. He has seen people choose a stick from his collection and seen how that person has formed a special bond with their stick, not just a tool for getting from a-b but a life long companion, a special firm friendship tht will never end!"

 "Thank you for sharing your story. I agree with others above, the absolute worst part is that people don’t believe you’re sick because with auto immune diseases you often appear quite normal. My mum still doesn’t believe I have lupus, even though I have shared my blood tests, experiences and taken her with me to the rheumatologist. I’ve worked hard to put it in remission, so it appears like I was making it up all those years. It’s very hard having little to no support."

"Rebecca, and all who have commented from their own experience, your attitudes give me hope for my two-year-old daughter, who will face some of these issues in her life after an attack of septic arthritis when she was 6 months old. I need exactly this type of education as the mother who will facilitate her ‘wellness’. Thank you."

And my favourite:

"I am so glad you wrote this post Rebecca, thank you! I was diagnosed with RA at age 11 and am now 26. I have been through it all… the medications and the side effects they bring, bed cradles to keep blankets off sore and swollen ankles and knees, lots of elastic pants and slip on shoes, the many many tests in addition to all the stigma, fatigue… how the list goes on.

The thing I have struggled with the most is the stigma or at least the lack of understanding of the complexities of the disease. I think it is particularly difficult when you are younger and you are trying to find your identity and work out who you are. You don’t want to be associated with an old person’s disease, you want to be thought of as and be young!"

The further we can reach with our stories, the more likely it becomes that society will be more tolerant of the pain and suffering it can't see.  There is so much awareness and fundraising for research into diseases like cancer, and anything that affects children - not that I begrudge them their awareness and campaigns, but I honestly believe that chronic diseases put such a burden on the individual and society that it would be so wonderful if some of the promotion of diseases came to focus on our life-long struggles.

I also bear in mind the fact that there are plenty of people out there who are like I was a few years ago - nowhere near being at peace with my diagnosis, deep in denial, and not wanting a bar of my prognosis.  My voice, though just one voice, may just speak for more than one person. It makes me all warm and fuzzy to read the comments from women who perhaps haven’t been able to speak out about their disease, whatever the reason. 

We’re all put on this crazy planet for a reason, and if mine is purely to endure and verbalise – I can embrace my purpose.