On the list the first thing to never say is: #1 Everything is going to be alright. I agree because it is true that you do not know what is going to happen and you cannot guarantee that everything will be alright. As a patient, although it's comforting to hear, you're thinking in the back of your head
"You don't know that."If you voice that to said supporter, they will usually reply with
"Stop thinking negatively."Well there is a difference between being negative and realistic and sometimes it's comforting to talk about what scares you as a patient. The problem, it's hard for you as the supporter to hear it, what scares your loved one and what could inevitably prove to be true. As a patient I have on more than enough occasions had to be the "strong one" for my loved ones.
However, you need to realize you are not the one dealing with a life threatening situation and although this is difficult for you, you are only fighting one fear, fear of losing your loved one. The patient is fighting fear on a whole other level. Fear of; leaving you, fighting the disease that causes the fear, fighting the real negativity clouding your brain, fighting the side effects and fighting the urge to quit. So although you don't want to hear about what the patient is afraid of, you need to sit down, sit up, shut up and listen. Instead of
"Everything is going to be alright"maybe try something like
"Yes all those things could happen, but they also could not. We're in this together and we have a strong medical team who knows what they're doing, so lets focus on what should and inevitably will go right."
This isn't on the list but this is a big one for me personally. Showing your doubts with your loved ones medical team. This is why. Everyone hates needles, if you don't, ok whatever you're weird. There have been times where I have had a nurse go to give me an iv and miss. They've had to re stick me, and there is nothing worse than your support system rolling their eyes in the corner right after the nurse misses the first vein and is gearing up for the second. The first stick hurt, the second stick will hurt too. If the nurse sees you rolling your eye's, it's going to make them more nervous that they'll fail again, and therefore more likely to mess up again. Instead of judging the nurse, accept that people are human and make mistakes. Maybe I was a really tough stick that day? Come hold my hand and breath through the pain of needle number two with me. Don't put down my medical team, these are the people responsible for saving my life and when you doubt them, I will doubt them, and then I will worry about the outcome of the treatment. I need to have faith in them. This goes for doctors, social workers, nurses, anyone who is trying to help your person through their treatment.
Now granted there are legitimate mistakes that sometimes family members need to stand up and say something, but make sure its a legitimate concern. Don't put doubt in the patients mind. If you really need to voice some concerns, do it with the doc in private. It's hard enough having faith in yourself to find the strength to fight this battle, but when you doubt the people who are spearheading your treatment, you can lose all resolve. Don't be the reason we need to waste extra energy to feel confident about what is being done to keep us alive.
#2 "I Know How You Feel." Do you? DO you know what it is like to be told "You have cancer?" Do you know what it is like to lose control of your life, not because of mistakes or choices you made but for something completely out of your control. Even if you have had a type of cancer, odds are your circumstances were completely different. Your response to medications, side effects and their severity. Chemo's used, radiations, risk factors. No two cases are exactly alike. I personally have been in the 0.01% range on more than one, heck more than 5 occasions.
"This has actually never happened before? No this can't be right, this only happens to less than 1%. etc. etc. etc."The rule of thumb with me was if there is a 0.01% chance of a side effect, plan on me being that 0.01. For example, I couldn't metabolize methotrexate or 6MP, two very common oral chemo meds. I developed GVHD (Graph vs. Host disease [where your body rejects your bone marrow]) not on my skin like the majority of cases but internally. You will never know how another person feels about anything, because you are not that person. Whether it relates to cancer or not.
The only other thing I can say about this is, it takes away from the significance of the situation. The significance it has on the patients life. When someone tells me, they know how I feel, it makes me feel like, I'm over reacting and shouldn't be as upset about it as I am. It equates it with the feeling of
"well it happens to lots of people, so why am I significant. Why should anyone care?"To show you care say something along the lines of
"I will never be able to understand what you are feeling, but if you want to talk about it, I am here to listen."Or simply
"How are you holding up?"If it's me, I usually respond with
"I'm ok,"but I'm always grateful you asked. Even if I'm thinking,
"How the hell do you think I'm holding up? I'm pissed off and feeling like crap."It really depends on the day.
To expand on that, the best questions I get asked are
"Do you have treatment today?" "Whats involved?"Questions that make me feel like you not only care, but are genuinely trying to understand what I'm going through.
#3 "Try to keep a positive attitude, relax and avoid stress. It can help you heal." This one entirely depends on how its worded. With me, I constantly need people to remind me it's ok to take a break and take the time to heal. I want to jump back into work. I want to be doing something and I don't want to be missing out on life. However, I do need to take a step back and let my body heal. With that being said, when people tell me to eliminate stress from my life, I want to scream. Essentially telling someone that something in their life is stressing them out and stress causes illness means that they are doing something wrong and are to blame for their illness. Also don't tell me to stay positive, it makes me feel like I'm not allowed to feel upset for what has happened to me. If I feel like I'm not allowed to be upset, then I will shut down, shut you out and wont talk about it, therefore causing me more stress.
Someone once asked me if stress from the treatment was contributing to my hair loss and if I could just relax it wouldn't be as severe. Well, no, it was not stress, it was a side effect from the chemo. However, by saying this, I shut that person out and did not vent to them about what was indeed stressing me out anymore because they had single handedly added themselves to that list of stressors. I completely agree with the article in how to handle this. If you see a source of unease or stress, ask what you can do to help. For me, my bosses just kept reminding me jobs were waiting for me. For others it could be
"Is there anything I can do to give you some more you time?"It doesn't suggest that there is a stressor but it gives you an opportunity to help. Also feel free to just help, because if the patient is like me, they wont ask for it. Feeling like a burden really makes this situation unbearable, because not only are we in disarray but we're causing it for others.
#4 "We can beat this." The article and I have very different interpretations on this one. For me, I like hearing it. I like knowing I'm not alone and have a strong support system. On the other hand, I can also feel like
"We, there is no we, I'm the one with the disease."You don't want to say
"You can beat this,"because that goes back to point number one. The way this should be worded (because its all about the wording) is
"If anyone can beat this, its you!"That implies you have a positive attitude, you can overcome adversity in your life and it's not concrete. Cheerleaders can be annoying, I know this because I was one, so don't be a peppy cheerleader, be a cheerleader who can also be a listener.
#5 "Now Now Don't get yourself worked up." If someone said this to me I would punch them in the face, at least in my mind. You have no right to tell me I cannot get upset, or be angry, or feel pain. NO RIGHT! You are making me feel like a burden with this comment and I already feel like not only has my life been ruined but I'm affecting yours too, so thanks for confirming it. This should be an obvious one but I really do feel that common sense is a rare commodity these days. You're supposed to be a shoulder to cry on, not the nail in the emotional coffin. When you say this, you're basically saying,
"You're over reacting, its not that bad, I could handle it."Well, then go ahead, take my place, and oh well you're at it, this is me no longer confiding in you, opening up to you and therefore causing more stress for myself by holding in my feelings. Job well done, support system. -_-
If you have nothing to say other than the above and can't manage something along the lines of
"Its completely ok to be upset, Its ok to cry, it's ok to be angry"then you have no right to be someone's support system and you need to evaluate your lack of empathy. No seriously, you are probably the type of person who drowns puppies and puts anthrax in the mail. Ok maybe not that bad, but you get my point. If you really don't know what to say, and I get it, I've had people who have had no clue, and there's been times where I've had no clue, just give me a hug, hold my hand or send me a heart emicon. That will suffice.
#6 "Congratulations! You're done with chemo/ radiation or both." This is hard for both parties. You're excited they're done treatment. They're excited they're done treatment, but something about this is hard to hear. When I was done, I got a ton of well wishes and was grateful for every single one. People kept asking me how I was going to celebrate, when really all I wanted to do was sleep. I know I should have been just as excited, I know I should have been MORE excited but something inside me wasn't ready. Just because you're done treatment, doesn't mean you're done. I finished over two maybe three weeks ago, but I'm still recovering. I'm also still waiting for results. For me, I prefer to celebrate good results than the end of treatment. Yes I'm excited but it doesn't mean anything. Until I hear, you are cancer free, I have nothing to be excited about. This is an easy one, say something along the lines of
"How do you feel now that you're finished treatment?"I can almost guarantee the results will be the same: anxious, nervous and relieved.
So for anyone wondering the age old question of what to say or ask, pretend you're on a date. Tread carefully. Just because it's your mother, sister, boyfriend, daughter, lover, boss, best friend, whatever, they're experiencing a life altering event and what you say can really have a strong effect. Don't be afraid to ask questions, and if you're not sure, a good place to start is,
"I understand if you don't want to talk about it, but I don't know and I'm trying to understand, is it ok if I ask...(insert question here)?"
Also, with all of this said, none of this was directed at anyone specifically. Odds are I've told you if you've said something to bother me so don't think a story is about you. You will know if it was you I was referencing, I would have told you.
One last note:
Any support is better than none at all. If you're going to support someone, never make them feel like a burden, because trust me, they're feeling it already and you validating that will only make them feel worse. Just let them know they're not alone.
