This may be slightly controversial.
If you have spent time with me, you may have noticed that when I speak about my illness, my struggles, my visits to doctors and having diagnostic tests done, I tend to speak very matter-of-fact-like; almost as though it were happening to someone else.
This is more of a protective character trait. If I downplay it, then it doesn't seem so awful.
What I would like to touch on is how we, as a society, sometimes trivialize the trials of someone with chronic illness - simply because some of the symptoms are expected over time.
Let me give an example.
Let's go all the way back to before I was first diagnosed.
I played every single co-curricular sport at school. I was away at tournaments, I was taking dance, singing, and piano on top of all of the athletics.
Then, even after diagnosis, I was still participating in most sports, I had more than one job, I was involved in several co-curricular activities including choirs and plays and musicals.
Then, almost 3 years ago, I was playing volleyball at LEAST 12 hours a week, working 30 hours a week at one job, and I had two side jobs for extra cash, plus continuing with singing for weddings and funerals. I was at the gym constantly. I always kept busy.
During all of this time, I managed to get through two major abdominal surgeries, more colonoscopies, endoscopies, sigmoidoscopies, barium follow-through tests, MRIs, CT scans, blood tests, stool samples, urine analyses, x-rays, heart monitors, and other diagnostic tests that I can not even count the amount. I have been to the emergency room at every single hospital and urgent care centre in the city. I have had to use catheters at home, I have had to deal with some incredibly embarrassing symptoms, and illness permeates every single part of my life in one way or another.
Yet - because the changes have been gradual, because the symptoms are 'expected' and sometimes 'predictable', they do not always seem devastating.
My life has completely changed. Although since it has been over time, it is not necessarily seen as tragic, overwhelming, or devastating.
For instance, testing positive for Lupus: due to my medical history, this is almost expected. Or when I was diagnosed with Ankylosing Spondylitis, or Raynaud's - it goes hand-in-hand with my other illnesses. It was almost an inevitability. Even the fact that I cannot have kids. You can look at my chart and say "well yeah, that's pretty obvious. That was bound to be a symptom/side effect of exhibiting so much illness and being on so much medication." So how can it be awful if it was something that was bound to happen?
Well, I am here to say that IT IS DEVASTATING!
My entire world has been turned upside-down and inside-out so many times that I could never relay to you how many 5-year-plans I have made for myself that have never gone the way that I had hoped or 'planned'.
Just because it didn't all happen at once, just because I did not go from a busy, athletic, working, and talented individual to a person on long-term disability, with major limitations overnight, does NOT mean that it isn't as devastating. It simply means that it happened more slowly. The pain is tragic. The suffering is tragic. The constant reminder that making plans is more of an idea and that I can never rely on my conditions to stay the same for any long period of time - this is exhausting.
And really, as far as fundraising goes, who wants to give to the same cause every single year? Year after year after year. And it never ends.
When does empathy start to fade for someone with a chronic illness?
It is so easy to forget that these conditions are continually devastating EVERY SINGLE DAY.
But how can a person wrap his/her head around the mindset that I will wake up and be in pain every single day for the rest of my life? That even with medication - natural or pharmaceutical - there is absolutely no way of ever completely eliminating all of the pain and discomfort that I feel from menial tasks like sitting in a chair to watch a movie.
You will forget that I am in pain every day.
I do not have that luxury.
I do not ask for sympathy - trust me, I am so blessed in so many other areas of my life. All I ask is that every now and again, purposely take one minute to try and understand what it is like for people living with ANY kind of illness or disability. Try to understand that it takes up 75% of the thoughts in our minds.
All. The. Time.