Finding Your Voice
Reading comments on Blood-Cancer.com and other sites for people like me with chronic myeloid leukemia (CML), I definitely see a pattern. The reality of having chronic leukemia or any kind of blood cancer for that matter often appears to make the person retreat and keep their thoughts, experiences, and feelings to themselves.
I’ve heard it voiced that this silence is done for a number of different reasons. One common explanation given is that other people do not understand what it is like anyway, so why bother?
Bingo.
That was me once upon a time and I absolutely agree that there is a lot of misunderstanding about what we are all going through so we sometimes choose to go at it alone. It got too frustrating trying to say something and either getting cut off, seeing an eye roll and cynicism, or being bombarded with your confidante’s own ailments for comparison’s sake.
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View all responsesThen, there’s the downplaying for whatever reason. Drives me crazy. I’ll never understand what the other person gains by trivializing your illness.
“We all have our little burdens to bear you know.”
“What’s the big deal about taking a pill? It’s like taking a vitamin in the morning.”
And so, we keep our mouths shut. It seems easier that way, a way to protect ourselves.
Another reason people say they keep to themselves is that they don’t want to worry their spouse/parent/friend/significant other and drag them into their new world.
Through wisdom I’ve gained being in this 'boat' going on seven years, I’ve learned if that person cares about you, they will want to know what is going on. They will climb aboard the boat with you or at least stand at the docks.
If they absolutely close their ears and want to pretend you don’t have blood cancer, a serious talk is in order. Maybe they aren’t the person you thought they were and instead when the going gets tough, the tough got going.
This or That
Have you undergone CAR-T cell therapy?
That isn’t to say others are going to necessarily want to listen to our whining about every ache and pain (because there are a lot of them), but I’m talking about something like, “it’s been rough for me the last few weeks,” or “to be honest, I’m having a bad day.”
Finally, another reason I’ve heard is that they don’t know what to say, are afraid to bother the doctor or ask questions, and would rather just carry on 'normally' until they no longer can. That’s like not talking to yourself.
I understand it is difficult and probably sounds like a broken record (how’s that for dating myself!), but ask questions. At least get first-hand knowledge of what your condition is, what the treatment will be, what difficulties or side effects to expect, and what you can do to try to hang onto a degree of 'quality of life.'
Whether you choose to share the information, is, of course, every individual’s choice, but I’m just going to let you know what I did. I went from being reason number one and not talking about it for several years to the opposite over the last year and a half. I still firmly hold to the belief that other people don’t understand or 'get it,' but that is no longer going to stop me from expressing myself. Yes, it probably annoys some people and I’ll still get the cynicism, the eye rolls, and my words cut off at times, but it is not going to stop me.
Don't know why, but I like to picture myself as a bird that was let out of a cage that starts chirping away as I fly off. I’m going to keep chirping for as long as I am here.
It feels like a great weight has been lifted away and I’m finally being honest with others and myself. It’s such a relief. You know the saying, “the truth shall set you free?” It really does. So, why not find your voice and use it?
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