The #METOO movement is a rallying cry for generations of women, men and children who have been abused. From despicable bosses who required sexual favors for professional advancement to those who believed that their wealth entitled them to prey on the vulnerable, it is time that that we stand up for those who have been taunted, ridiculed and called liars when they have tried to seek justice and recognition. But, if you ponder thousands of patient stories, the #metoo also applies to many in the IC patient community.
Are you one of the countless men and women with IC and pelvic pain, this author included, have been told that it was “all in their heads?” Were your symptoms disregarded, your tears ignored and your pain scoffed at because of your sex? Not only have some physicians let us down, but so have family members and friends who have insulted and diminished our struggles.
I’ll never forget the story of an IC patient who was the daughter of a physician. He simply refused to believe that she was ill and disowned her. She lived alone in a small apartment, struggled daily with intense IC symptoms and had no family member to help her. Another patient struggled with a number of painful conditions including IC, IBS, vulvodynia and fibromyalgia (aka IC Subtype 5 – Central Sensitization) was sent to live in a group home by family members who believed that it was all in her head. And many other women from the 1960’s and 1970’s were sent to psychiatric hospitals because they had the audacity to ask for help with their pain. Many received apologies from psychiatrists who quickly determined that they had real pain that required real bladder treatment.
Don’t assume that men haven’t been victimized too. One man with IC was told by his male doctor to “be a man” and not talk about his pain with his family and friends. He didn’t tell his family for more than five years and lacked support that could have eased his suffering and loneliness. Another was struck with an IC flare while on an airplane. When he asked to use the restroom urgently because his pain level was so high, a female flight attendant looked him up and down, said “You don’t look sick” and sent him to the end of the line. He passed out from the pain.
I can think of two examples of egregious work place harassment of IC patients that stunned me.
- Several years ago, I spoke at length with a young IC patient was working in a Japanese automobile factory in the USA. She was brought into a room of male corporate executives who then asked her to demonstrate how she self-catheterized. True? Oh yes, that’s very true. Their intent was to demean and intimidate and they did it well.
- A man with IC was working for a major cell phone company. His female supervisor purposely relabelled the men’s restroom as a women’s restroom (despite the fact that there was already a women’s bathroom on that floor) on his floor to force him to go to another floor to use the restroom. He documented multiple incidents. Sadly, he died of a heart attack shortly afterwards that, I believe, was exacerbated by extreme workplace harassment.
In Oprah Winfrey’s magnificent speech last night at the Golden Globes, she said that the most powerful weapon we have is to speak our truth. We must speak out when we are harmed and disrespected. And, more importantly, we must support others who have been hurt, harassed and/or abused. This means that we believe them when they say they are in pain. It means that we help them when they need to find treatment. It means that we stand with them when they seek justice.
Have you been harassed because of your IC? Please tell us your story!