1. When you're first diagnosed, there's a period of mourning.
Each new dianosis does cause some mourning. Some caused more than others, but they all meant the same thing - my life is not going to be the one I pictured. It took a long time for me to be ok with that, and, some days, I still resent how different my life is from what I wanted.
2. Accepting change is often the hardest part.
This rings especially true for me. I had an incredibly hard time coming to terms with the fact that I couldn't do what I used to be able to do anymore. I had to let go of my dreams of stage managing after college. I had to realize that each new treatment was only going to help, not cure. It's a hard pill to swallow (pun intended!).
3. You never really get used to being sick.
For a while I thought I was getting used to things. Going to doctors, filling out forms, having procedures done; it all became routine. But somewhere inside, I was (and still am) angry and frustrated and not used to things at all.
4. Not all disabilities are visible.
If I could shout this from the rooftops, I would. Not a single one of my disabilities is a visible one. But that doesn't mean they aren't real. I've had professors who doubted me when I told them I needed accommodations and felt pressured to stand on crowded trains and buses just because I look healthy.
5. Years of surgeries and treatments can change how you look at yourself.
An mentioned in a previous post (which you can find here), I used to be ashamed of my scars. I would wear my hair longer than I liked, just to hide the biggest one on the back of my head. I have scars on my upper arms from PICC lines and scars on my stomach from getting my gallbladder removed. I used to hate all of them and I certainly looked at myself differently because of them. I still look at myself differently, but now it's a positive difference and not a negative one.
6. You often have to pick the lesser of two evils between side effects or treatment options.
One word - ketamine. Other, less extreme, examples of side effects I deal with due to my treatments and medications include sinus pain, anxiety, fatigue, nausea, stomach pain, and headache (yes, my headache medicine had a side effect of headaches), to name a few.
7. A physical condition affects you mentally, as well as the other way around.
One time, in college, I attended an award ceremony held by the theatre department. There, everyone active in the department was given a silly award based on something memorable about them from the year. I was given the "hypochondriac" award because, apparently, I complained about being in pain too often. For several years after that, I hid my pain and struggled to pretend I was ok. This led to an increase in anxiety and depression, which led to an increase in pain. It was a vicious cycle. I eventually learned it was ok to admit when I was in pain, but only after my pain escalated to the point that I couldn't hide it anymore.
8. You spend a lot of time waiting.
Ugh, the waiting. Waiting for appointments. Waiting at appointments. Waiting for treatments. Waiting for pills to start working. Waiting for the pain to go away. Chronic illness = waiting.
9. And a lot of time taking medications - sometimes for the side effects of your other medications.
I currently take 7 pills every morning, 1 pill every afternoon, and 1 pill every evening. Also, I take a number of pills or injections as needed for pain, and then, I take pills for the side effects from those pills/injections.
10. Sex can be a real challenge.
Yeah, so, my mom reads this blog. Hi mom!
But seriously, I'm sure all of you can imagine the difficulties things like joint pain and headaches can bring to sex, not to mention anxiety/depression and medication side effects like nausea.
Coming soon - 21 Things (Part 2)
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