Support Tools: "Say What!?" Handling upsetting conversations on the brain tumour journey

It’s inevitable -- Somewhere along the way, someone will say the wrong thing to you about brain tumours. It happens to practically everyone fighting this disease! Often patients and survivors are confronted with feelings of confusion when responding to something someone has said that they feel was inappropriate, insensitive or offensive. People generally do not mean to offend, but it's often an unintended consequence that comes up in conversation.

Patients are left debating possible responses when they find themselves in this kind of situation:

  • Should I let the "offender" know how I really feel?
  • Perhaps I should give them a piece of my mind and set them straight?
  • Is it really worth the effort to enter this conversation further?
  • Maybe I should ignore them altogether?

The truth is when it comes to brain tumours people just don't know what to say. Adding to the difficulty and confusion here is that everyone experiencing the brain tumour journey is unique; so what might be appropriate to say to one patient, may turn out to be offensive to another.

There is no real guide on what to say to brain tumour patients. Chronic illnesses, like brain tumours, make people uncomfortable. Many people become nervous, while others are presumptuous. Others may be naïve to the issues patients face. Furthermore, a select few do not have a social/verbal filter and simply come off as jerks!  The important thing to remember is that in most cases their intent is not malicious, but that does not mean the damage is not done. Handling difficult conversations resulting from an upsetting remark is one more thing people with a brain tumour need to deal with.

Many patients learn to cope with upsetting and offensive comments in their own way. Some learn to forgive and accept the lack of knowledge in others, choosing to not pursue it any further. However, if you feel the need to discuss with the person how their comments upset you, the following tips could prove to be helpful when looking to approach these situations in a tactful and respectful way.

  1. Pull the person aside

    When in any group, large or small, the offender receiving your response will have face to lose, which will likely make them defensive. It is always best to work through a problem with only the people who are directly involved. Remember, there are a number of logical reasons listed above where people may say something offensive in a delicate and awkward situation.
  2. Determine that it is a good time to talk

    Remember that you both have your own priorities. Respecting each other's time will make the discussion more productive because you will both be ready to talk, in contrast to being rushed or distracted by other thoughts or responsibilities.
  3. Speak calmly

    If you feel or look physically upset (e.g. on the brink of tears, or hostile enough to be physically violent) excuse yourself from the situation and calm down before addressing the hurtful comment. There are a number of ways to deescalate increased emotions. Engaging in deep breathing exercises, meditation or mindfulness are just a few examples of techniques that can help calm unpleasant thoughts.
  4. Do not paraphrase

    Be sure to tell them exactly what it was they said to offend you. If you say something to the effect of "I think it’s horrible you think I’m poisoning myself with my treatment" in response to a statement like "chemotherapy does more harm than good with all those side effects," you are going to appear as if you are not listening and/or jumping to conclusions, which can make the situation more hostile.
  5. Be brief, but explicit

    No one wants a lengthy lecture in response to an inconsiderate remark they were not aware would offend you. Simply inform the person what they said made you upset; and if you want to explain why, keep it brief. Make it short and to the point, but without being curt. Phrases like "it's an issue that hits close to home for me" should be reason enough for the person to respect your reaction.
  6. Be polite

    Avoid telling the person they sounded like a jerk. As a matter of fact, avoid all profanity if possible. In addition to speaking calmly, it is important to convey calm behaviour. Try not to use a sarcastic tone or display antagonistic body language (e.g. pointing, a hand on hip or crossed arms). Be open to the conversation because that's what it is: a conversation - aimed to rectify a misunderstanding.
  7. Use “I” statements

    Beginning every sentence with "you" is extremely accusatory, even if you are only stating what appear to be facts to you. A more productive way to address the issue is by saying "I was uncomfortable with a remark you made earlier". By using “I” statements, you establish that it is your discomfort you want to address, even though the other person is the one who created your discomfort. Be assertive and avoid attempting to neutralize the remark, but also do not incite defensiveness by accusing him or her of hurting you - remember that the other person may be unaware that your feelings were hurt. The remark was likely thoughtless or inconsiderate, and in most cases it was not meant as a personal attack against you.
  8. Do not try to extract an apology

    If the person is sorry, they will tell you. It can be very disappointing waiting around for an apology if it is not coming. The purpose of telling the other person you were offended was merely to inform them; they are not indebted to you. Now that you have made your discomfort clear, be aware of any changes in the person’s behaviour in future interactions. If they continue to make you upset or uncomfortable with similar comments, you may want to refrain from socializing with this person in the future – or at least while on the brain tumour journey.



This article was written and provided by a Brain Tumour Foundation of Canada's Support Services Specialist.
You can call for support at 1-800-265-5106.

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