This is mostly just me venting, but I have had a lot of really STUPID and unhelpful things said to me in the last five years. For the most part, I am able to let it roll off of me and chalk it up to good intentions, or at worst, ignorance. But there are two that have really gotten to me - one just yesterday.
The first one (and I’m paraphrasing) was that if I was just more optimistic my cancer and treatment and subsequent side effects would improve and I’d get better. Excuse me! What?! There are several problems with this. 1) I cannot Pollyanna my way out of having cancer 2) I’ve always been a realist. This is not to be confused with pessimism. With everything in my life, I face it head on and all the possibilities - good and bad. This is a basic part of who I am, and I am not changing it b/c you don’t think it’s how I should approach my (read MY, not your) cancer 3) No one (and I mean NO ONE) has the right to tell another person how to feel - about anything, but especially about their own illness.
Yesterday, an individual that has barely seen me in the last 5 years said that they were talking to another CML patient and that I should know that I can have a normal life, and some don’t even require treatment. Whew! What a relief! ONE stranger said it to another nonexpert, so it must be true (*heavy sarcasm*). Let’s not even talk about how wildly inaccurate this is. As in, treatment is an immediate necessity unless you want to die, and it is still recommended for a lifetime. However, they are trialing letting people off for treatment-free periods as long as the numbers stay down. I had so many health issues and complications from the cancer and treatment (some of which were life-threatening and some that affected my vision), that for me it was the best choice at the time. It was not a decision myself or my doctor made lightly, and I have very little wiggle room before resuming treatment, whenever that may be. But rest assured, this random person says I can have a normal life (eye roll). Yeah, if by “normal” you mean still being in pain every day and fatigue worsening to the point I had to start PT for cancer fatigue - even with 6 mos. off the chemo. If by “normal” you mean that the number of pills I need to take every day just to function keeps increasing because of conditions that were caused by the treatment or the cancer itself - anemia that keeps worsening, a swallowing disorder, loss of appetite, altered taste, getting sick at the drop of a hat and staying sick for weeks or months, balance issues, the aforementioned pain, walking, the handicap sticker that has switched from temporary to more long-term last month, and the list goes on. I used to have perfect eyes and teeth, too which is no longer true. Can I live for a long time with this cancer? Yes. Is it what I would call “normal”? No! Not even close! I am very lucky to here, but I cannot stand when someone diminishes everything I have been through because their own experience has been (thankfully) different. And when someone that knows me, takes that more to heart than what I’ve gone through. EVERY CANCER PATIENT IS DIFFERENT AND HAS A UNIQUE PERSPECTIVE ON IT! THERE ARE NO TWO EXPERIENCES THAT ARE ALIKE! So, stop trying to fit me into the box you think I should be in or someone else tells you I should be in. Every day has been a struggle, but I still get up and fight. Saying anything less about my journey is condescending and reductive and takes away just how hard I’ve worked to get where I am.
I am still here. But it took a lot to get me to the place I’m in now. And I didn’t do it alone. I know that. But, comments like this are so not helpful. There’s a difference between being positive and supportive, and just being dismissive. Do your family and friends with cancer a favor, and don’t say things like this. And for goodness sakes, just listening to their story goes a long way, too. I think we all want to be seen and heard <3 <3 <3
