My Invisible Disability


A word cloud comprised of many invisible disabilities. Credit: Invisible Disability Australia

I have been a pretty much open book most of my life. I share myself honestly, give my opinions (even if unsolicited), and welcome tough conversations. I am an introvert and enjoy mostly one-on-one or small group socialisation. I have the tendency to put on a tough, resilient, independent image to all, so it’s been very difficult to contemplate sharing my invisible pain. But as I say to my daughters, “you have to name it, and claim it”, I need to honour my own mantra now; I see no other choice.

For those friends who knew me way back in high school and mid-twenties, you undoubtedly remember me (somewhat) as an athlete. I ran varsity track; competed in the high jump. I was in alpine ski club. I moved to Lake Placid after university, where I prided myself on not having a car, and getting around and to my 5 part-time jobs, on foot, wheels, skis. I frequently ran around and swam in Mirror Lake. I rode my bike to and from work where I sold bikes, skis, and outdoor gear. I rode my bike up Whiteface Mountain toll road, and went back country and XC skiing with my friends. I tried many of the olympic sports like speed skating, luge, and biathlon. I even took up snowboarding, albeit that was short lived. 

I had an episode where I couldn’t walk for 3 days due to severe muscle spasms in my mid-back. It was a long recovery and felt like it never really went away. I called it where I carried my stress. I saw a chiropractor at the time, and he noted I had arthritic changes happening in my lower back, but there was nothing I was too worried about, as I was young. It wasn’t until my thirties with severe lower back issues keeping me down that I got properly diagnosed with degenerative disc disease (DDD) in L4-S1 if you speak spine. I have always had good and bad days, but it has always plagued me. I think I just got used to the pain, sucked it up, medicated as needed. I have missed social gatherings, weddings, my kids’ events, and for the last couple years of my tenure at GlaxoSmithKline, I was mostly working from home. My work colleagues may remember when I was at my worst, unable to sit, so I put my laptop on a box in my cubicle and worked standing up all day, or kneeling on the floor while at the table during group meetings. It was exhausting.

Fast forward to Australia. I have been here since 2015, and miraculously due to life and work changes, I have been able to avoid having regular treatment for the DDD. My girls were having trouble coping with me having to work long hours in the city, so I started what became Sandee Rain Boutique in April 2017, and will celebrate 5 years as SRB on 17 Dec. I wanted to be there for the girls, and it’s certainly been the only thing allowing me to still do so. In early 2018 I was diagnosed with breast cancer. I think I handled that on my own as well as possible because I had to get through it for my girls. It coincided with my marriage ending, so cancer was a catalyst and a distraction; I had to live to be with the girls. Thankfully, even though stressful, it resolved with the girls and I staying and creating a life in Australia. We are dual citizens.

Much later after cancer treatment, I was literally flying high. I enjoyed my adventures with the girls, and worked the Boutique around our lives. I began to accept the changed body form, the scars, the radiotherapy tattoos, the numbness in my armpit from 2 tumour and 1 lymph node removal surgeries. Once I accepted myself, I knew I was in a better to place to be in a relationship again. When Greg and I met 3 years ago, I was enjoying life, I was upbeat, I was strong. I was also about 63 kilos.

About 2 years ago, the strong nerve pain increased around the surgery areas. Although both my surgeon and oncologist said it was normal as the nerves healed in a jagged way from surgery, it would pass. It didn’t. I went for my regular mammogram and nearly passed out from pain from being pressed against the machine. On top of the never ending fear of cancer’s return, my body wouldn’t even cooperate with the machine that saved my life. There was covid in the mix, and I wasn’t able to follow up on this except over Telehealth with my radiology oncologist. I got an MRI of the chest, and there was inflammation around my rib where the radiotherapy was targeted. If it weren’t for this one doctor, I would still be trying to smile through the pain. Apparently, I have developed a late, rare toxicity from radiotherapy causing rib osteitis. Apparently I am in the 1% of patients post breast cancer radiotherapy to develop this. I was referred to the Peter Mac pain clinic last year, and have received 2 nerve blocks to date (including a sneaky injection to my SI joint the first time). I had a follow up MRI this past October, and the inflammation is still there as well as affecting surrounding muscles. This, coupled with my DDD has exacerbated the pain. I am on medication to calm the nerve pain, and reduce inflammation. Due to fatigue and pain while resting, I don’t sleep very well, or do much activity. I am now 85 kilos.

I have had 2 visits with my pain specialist recently, and he’s told me what I don’t want to hear, I have to stop physical activity, focus on myself, rest, and heal. I have become a champ at doing this boom/bust thing where if I feel good one day, I overdo activity, and then pay for it the next several days. The only person that sees what’s happening to me is Greg. I have only recently shared with the girls because I can’t put up a front anymore with them, or anyone really. I have had to cancel plans with people I care about, and it depresses and saddens me. I have been under tremendous pressure running the business which now has to take a backseat, as well as undergoing unfathomable stress and court costs of current proceedings for over a year, on behalf of my girls. All of this adds up and affects my entire nervous system. So, for now, I need to get worse before I get better, and get out of the downward spiral. I have an amazing team of specialists who truly listen, and who truly care about my health.

In all of these years, I have tried to be brave, stoic, and manage through pain. It’s invisible, so people only see what I want them to. I’ve been hiding myself from my children and others I love. I have to say it’s truly a mindfuck to deny the pain, or even accept the pain, and accept my disability, and ask for help. So, this is me, sharing my truth and going on this journey so I can be the best Sandee possible. 

I am not the only one suffering in silence with an invisible disability, so as I say to my children quite often, “it’s important to show people grace, because you don’t know what they are going through.” 

Image of a word cloud with various invisible disabilities listed.