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Working with a Rare Disease

You never imagine that your life could change in an instant.

You never imagine that your ‘normality’ can get turned upside down & spun around like it has been let loose in a washing machine.

You never imagine that you will get told by doctors that they don’t know what more to do.

However, for many of us in the rare disease community this is our reality. I was 15 when life as I knew it came to a screeching halt. I had always been healthy, active & a relatively problem-free child. So when I started battling to smile, speak & swallow I knew that there was something serious going on. The pure exhaustion that controlled my body meant that I had to give up so much of what made me happy such as dance classes, exercise, & just living the general life of a teenager. Getting a diagnosis was a huge relief as we could finally name the beast that had invaded my body, & turned my immune system against itself. But it was also terrifying when we read what Dr Google said could happen, & it was something we had never heard of before.

Fast forward a couple of years, I finished high school; moved into my own place; managed to get a job; got married & had more hospitalisations than I care to remember. The first part sounds pretty normal doesn’t it? But it was tough. I missed a whole term in matric due to my health & could never partake in group exercises or team building as my body couldn’t cope. I managed to get all A’s but that was only through pure grit & determination. There were often days when all I wanted to do was climb into bed & sleep – in fact there still are.

Finding a job with a rare disease can be difficult too. People often don’t understand what the condition actually is, or the effect that it has on your body. They don’t understand that when you are tired with a chronic illness, it is very different to their tired! I have had ex-bosses expect me back at work the day after I have been discharged from hospital, & tell me I need to plan my admissions better so they don’t fall at our busiest times. I have had to climb under my desk at lunch time in order to have a nap to see me through the remainder of the day. I have had colleagues tell me I am rude as I don’t talk, & I have had to take countless days of unpaid leave for all my doctors’ visits & hospitalisations. I have had my doctor write a letter explaining the fact that I have a life-threatening condition & when I gave it in, it was simply put into a drawer under a pile of papers. I have been made to feel guilty about being “sick” & like I was less valuable to the company because of this.

2 years ago we moved to a new province & the very idea made me feel ill. Never mind the fact that I would have to change doctors after having been with the same one since day dot, I also wondered who would ever employ me when I was clearly going through a relapse & needed to rest throughout the day. Plus to have to explain to someone new what was wrong with me – would anyone be willing to take a chance on me? Would they think I was worth the risk? I am a hard worker & have always given everything of my best, but would they see it? Would they trust me? Would I be able to be financially independent ever again?

Currently I work 2 jobs (Rare Diseases SA & my own social media business), & am able to take care of my happiness & health, as well as support myself financially & take some of the pressure off my husband. I am able to work from home when necessary so I can climb into my bed when I need to; I can do everything on my laptop so when my talking is bad I don’t have to battle through telephone conversations or trying to explain why I am slurring at 10am (and no, I am not drunk); & I can work hours that fit around doctors’ appointments & blood tests.

The only thing I still battle with is events – I am a sociable person & always want to say YES to everything possible; but I have learnt I cannot commit to anything (even social events) at the moment. There are times I have pushed myself too hard & ended up in crisis being rushed to ICU; or have been so exhausted that I can’t even talk to anyone so just feel useless anyways! I have had to learn my limits, & learn to hand over some of my tasks to others – this has been especially tough as I am a little OCD & know how I would want to do everything.

There are still days where I want to simply stay in bed & cry or sleep, but I also know how important it is to keep busy & keep my brain active. I also need to know I am not a burden on my husband & able to at least give something towards our monthly expenses. I may never be a millionaire, but my heart is happy & I feel better about myself knowing that I am helping others. I want my life to have purpose & don’t want to ever be stuck in a job that I am simply doing as a means to an end.

With all of this being said, I feel truly blessed with the work I have & hope to continue doing it for a long time to come!

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