One day, when I was in second grade, I raised my hand to go to the bathroom, the teacher ignored me, and I peed in my pants. [Yes, she ignored me. That’s my story, and I’m sticking to it.] The teacher did not, however, ignore the girl one seat ahead and to the right when she raised her hand to report the puddle beneath my seat. Instant shame. Head to toe. Even now in this moment I feel a shadow of that shame; but also, as I disclose my story, I feel a subtle wave of liberation rising up. Words matter. Silence hurts. And stigma is often the most damaging part of any health condition. So let’s talk about stigma, specifically as it relates to incontinence, a health issue with a very potentially public aspect, as my second grade self can tell you.
Stigma can cause us to feel (1) different and (2) devalued. Sometimes words do the stigmatizing – she peed in her pants! Other times the message is nonverbal – in the form of stares and double-takes. Then there is that unhelpful habit we humans have of projecting insults or judgement from an imaginary other. However we come to feel stigmatized, the unfortunate consequence can be an unwillingness to engage in our lives as much as we would like. As a pelvic floor physical therapist, I see this all too frequently. I have patients that want to attend exercise classes or parties or even vacations with their families, but refrain for fear of leaking or feeling embarrassed about how often they have to go to the bathroom. No one wants to feel exposed.
While undoubtedly society itself has a responsibility here to change – to not intentionally make people with incontinence feel different or devalued, such a change can take years and years. Just ask anyone who has fought the good fight to eliminate the “R” word for those with cognitive challenges or to stop discrimination against people with AIDS or any number of other health issues – pick your battle. For those suffering from stigma today, it’s simply not practical to wait for society to get on board. Personal resilience is what’s needed here. And now. This means facing fear. When we face the things that scare us, it turns out that we actually relax the fear circuitry of our brains. In deed we are not so hard-wired. Change is possible. Old dogs? New tricks.
In addition to new tricks, we also may benefit from new beliefs. We need strong beliefs to bolster our confidence – like this: no one defines who I am. I think we can all agree with this statement, even as we struggle to not let others get under our skin. A phrase that I’ve personally borrowed in order to hold on to myself is this one – what other people think of me is none of my business. When I remember this, I feel suddenly freed. At least for the short term. I can repeat it as many times as I need to.
If you are not living your full life because you believe other people’s negative opinions of you are your business, then ask yourself this: What is more important – living your life the way you desire or hiding from the life you want to live? What is more meaningful – who you think you are or who someone else thinks you are? I know you know the answers.
One of the best known antidotes to stigma is social support. Did you know that one in four women over the age of 18 have incontinence? Did you really think you were alone with this? If you start a conversation about leakage with someone you know, you may be surprised to find how much good company you have. People just aren’t talking about it. People need to start talking about it! The more we talk about how incontinence is a thing, the less of a thing it will be.
Here’s another antidote to stigma. EXERCISE! I know you may not believe me, because I’m a physical therapist, and I pretty much think the answer to everything is exercise, but guess what! Researchers have found that building muscles increases the resilience of the mind. Like anything, the proof is in the pudding, so even if you don’t buy it, you can try it. And see for yourself. “I wish I didn’t just exercise,” said no one ever.
Lastly, if you are going to fight stigma with personal resilience, then it is going to be important to stay positive. Positive and realistic. This aspiration could take the shape of positive affirmations or positive self-talk – the kind that makes sense to you. Throwing some of my own ideas out there, you could try saying to yourself: I can handle what comes my way. I deserve a wonderful life. I am worth this. I’m doing this, because this is important to me. And need I remind you? What other people think of me is none of my business.
There’s so many good reasons to reduce stigma and to build resilience, but as a pelvic floor physical therapist, I find some aspects of this work conflicting. For instance, there is a movement out there called underwareness, and I cannot deny that I love this title. I especially love their commercial. I think that the company that makes these underwear is doing a great job of reducing the stigma of incontinence, but it’s hard for me not to believe that they are doing this in order to make a buck by reinforcing a need for their product. We also have Whoopi Goldberg out there doing good destigmatizing work, while promoting the use of pads. I am all for recruiting role model celebrities to dismantle stigma, but once again, I find their agenda to be off course.
Let me tell you why I want to help destigmitize the condition of incontinence. Because I know that this stigma actually keeps 11 out of 12 women from talking about incontinence with a healthcare provider. Because those that decide to seek help wait an average of seven years to do so.
Stigma is not only keeping people from fully engaging in their lives. It is keeping them from seeking help! Let’s face it. Incontinence underwear and pads are essentially a band-aid for what is most often a very fixable problem. That’s the message that is not getting out there. Why not? Well for one thing, physical therapists can’t make commercials. We are not a product. We help you get rid of products. Sometimes we help you avoid medication and surgery too by the way!
Questions… If you leak or have frequency/urgency issues, are you going to be one of the 11 out of 12 people who don’t ask for help? Are you going to wait 7 years to see what can be done about this? Please find a pelvic health physical therapist near you, because if you want to know the easiest way to remove the stigma of incontinence, it’s to take back control of your bladder.
P.S. Also hold on to strong beliefs about yourself, stay socially connected, exercise and be positive. : )
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