Written by Jacquelyn Bonneville, Occupational Therapist
Returning to work, school, leisure classes, or a social group can be very challenging when someone has spent a period of time as a ‘full-time patient’ or is engaging in lengthy rehabilitation.
Here are some of the techniques I recommend when someone asks you, “Where have you been?”
1. Who needs to know?
The only people who NEED to know about your injury/diagnosis are people who have a direct effect on that injury/diagnosis. Often, this is your medical and rehabilitation team (e.g. Family doctor, Occupational Therapist, Psychologist, Physiotherapist, Naturopath, Chiropodist). If an insurance company, WSIB, and/or lawyer are involved you will be asked to also provide consent to these professionals that will be very involved with your care. If you are receiving some type of subsidized pay, you may need to disclose diagnoses to a human resources personnel or union if applicable. If you are a student and require academic accommodations due to your diagnoses, the only person who may need details is your Student Accessibility Coordinator. Once again, these people are invested in your care and cannot disclose details to others.
Family, friends, loved ones, employers, co-workers, and teachers/principals do NOT need details of your injury/diagnoses, even if they ask.
2. So I shouldn’t tell any of my friends/family?
When considering whom to tell, balance the need for social support and sympathy with desire for privacy. Going through a recovery period can be isolating, and social support is highly recommended – but maybe you don’t want or need to tell them everything.
Of course, then there is the issue of stigma. The sad reality is that people with invisible disabilities (concussion, brain injury, mental illness) are judged. Also if there is an insurance company or lawyer involved, people may also judge just ‘how injured’ they think you really are. Of course, the issue isn’t with the victim – the problem lies with those who judge and discriminate against them. Your medical and rehabilitation team is the only group who knows just how injured you are, and is the only group who needs to know. Do not feel the need to defend yourself with accusers. However, given that this ignorance exists, it is wise to protect yourself from it when you can by using some productive avoidance communication strategies.
Ask yourself a few questions before you reveal details about your injury/disease:
- Why am I telling this person?
- What might this person do with the information I give them?
- Do I trust this person?
- How can this person help me if I tell them?
- How might I be harmed by talking to this person?
3. What do I say?
Part of your recovery will likely include slowly re-introducing yourself in your community, such as grocery shopping, going to the bank, or walking around your neighborhood. Running into people you knew before your injury/diagnoses can be a very stressful experience if you are not prepared. Many of my clients report fear that they will run into someone they know while trying to progress their recovery what do you say?
The best strategy is to come up with one to two LINES that you have prepared, categorized by who you don’t want to talk to and who you may want to talk to. Here’s what it looks like:
Have one sentence prepared for people that you DON’T want to disclose details to:
- “I’ve had some private issues I had to deal with, but I’m getting better, thanks for asking.”
- “I’ve been ill (or had some things to deal with) but it’s getting better. I’m not really comfortable talking about it, though.”
Redirect the conversation if you don’t want to talk about it.
After you use ‘your line’, follow it up immediately with a question to deflect the conversation back on the person doing the probing. People love to talk about themselves – keep asking them questions!
- “I’ve had some private issues I had to deal with, but I’m getting better, thanks for asking. How are your kids doing? Is your summer going well? I heard you got a new puppy, how’s that going?”
Have one sentence ready for people that you DO want to disclose some details to.
- “I’ve been ill (or had some things to deal with) but it’s getting better. I don’t mind talking about it if you’re curious.”
- “I’ve had some medical issues but I’m getting better, I should be back at work/school soon enough.”
Remain consistent with your answer no matter who should ask. Your answer should always be the same. Some people have an attention span problem so you’ll need to repeat this to them multiple times. Stick to your line, and people will eventually stop asking.
4. Overall reminders for those in recovery:
- Do not feel the need to justify your injury/diagnoses, especially if they are invisible.
- Do not be afraid that by engaging in treatment or recommended activities in the community by a treatment team who knows you best, that you are doing something wrong.
- Do not hermit yourself – this will stall your recovery.
- Don’t be afraid to go out in your community during your recovery!
- Do not completely withdraw socially – this will stall your recovery.
- There are ways to reap the benefits of social support without having to disclose too much. Talk to your treatment team if this is hard for you.
“Do not waste your time trying to explain yourself to people that are committed to misunderstanding you.” – Shannon L. Alder
Required reading for those faces with uncomfortable questions about their injury and recovery!
This is, of course, a very HARD question to answer. In many states there are the “right to work laws” and then there the federal law for people with disabilities to have work/school accommodations when it comes to the work place, transportation, and many other fields. Last there are HIPA laws.
I tell just about everyone that I’ve had strokes because of the way I speak or because of the WRONG words I often verbalize. I feel safer by telling people about myself and I always try to do so in a somewhat humorous way…. IE: where did that word come from? Please write down/send me text or email so that I remember, etc. Lawyers, insurance agents, state/federal employees that I need to deal with I ALWAYS take another person to help me out.