“I really want to create a community.”: Interview with Shelby Hadden Part 3

tightly-wound9.  Has your pelvic floor issue ever made you want to do something harmful to yourself?

Shelby:  Ugh….yeah. [silence] Uh, yeah, there was a moment where I did try to hurt myself.  Uh.  I don’t want to go into specifics of what I did. [silence] But I just…I felt so hopeless and so mad at my body that it couldn’t do what I wanted it to do and I was working so hard and I didn’t feel that I was ever going to get better or ever find someone who would be patient with me and work with me on it. And it makes me really sad to think about that moment. And it makes me sad to think other people feel that helplessness with conditions like this. Because it’s a lot! It’s your physical body. Your ability.  Your limitations on your body.  Intimacy.  Love.  Rejection.  Connection.  It’s all of these really – vulnerability.  It’s all these big emotional things tied to one body part and it can be really, it can be really, really hard and hopeless sometimes.

10. Did you ever meet anyone else that had a similar issue with their pelvic floor?

Shelby:  Yeah, I’ve actually had a couple friends with vaginismus.  They didn’t seem to have it as badly as I did. Both of those people could use tampons. It didnt take them very long with some dilator work. They used dilators for a couple months and they were able to have sex. It was frustrating to see someone with my same issue, but not as severe.

I have a close friend who has vulvodynia and that’s really – vulvodynia is really tough too. She and I are really sad that we have each other, but so grateful that we have each other. I say “sad” because we are sad that we both have this, but we feel really grateful because people don’t get it. They just don’t get it! They don’t know what to say and they want to fix you.  So, she and I have had lots of long conversations.  She has a committed partner so her situation is different from mine.  But, we both say to each other “Hey, my situation is not worse than yours and yours is not worse than mine.”  We just try to “check” each other and validate each others’ feelings.  Sometimes, you know, I don’t know, feel better about myself,  I would say “Well, at least I don’t have the pressure of having a partner in my life” and she would say “Well, you know, I’m so glad I have someone who loves me and I don’t have to be dating and having these encounters.”  I’m really grateful to have that support system with her.

11. What are you looking to accomplish in making Tightly Wound?  

Shelby:  I really want to create a community – I want to start a conversation – I want women, or people who have vaginas – to feel less alone when they have these experiences. Ever since the essay’s been out, ever since the Kickstarter’s been out – people have been coming out of the woodwork. People that I barely know or people that I used to know – they really connect with it.  People have a similar condition or a physical conditions have had similar experiences like I’ve had.

You know a lot of people just feel really inadequate when it comes to sex and dating.  So, I think a lot of people are really happy that I’ve started this dialogue.

I think a lot of people have had long journeys in finding treatment for their conditions and have been frustrated with doctors. We are all kind of trained growing up to “trust” doctors and go to doctors. They [doctors] have the solutions.  But, they don’t have the solutions.  They’re just people.  When they can’t deliver, we get very disappointed and very frustrated.

I want, let’s see, what else do I want to accomplish?  I want people to know about conditions like mine so when people say “Hey, I have this thing…” the partner can say  “I’ve heard about it.  I have a little insight.  I heard someone’s personal story and that gives me insight into how you might be feeling right now and I can be empathetic to that.”

What else do I want to do? Maybe help people find that there is treatment out there.

12. What do you want doctors to know?

Shelby:  I want doctors who are unaware of pelvic floor dysfunction to know that there is treatment out there and that they need to help people – point people in the direction of treatment.  They don’t have to give the answers.  Some doctors I saw tried to give me answers when I wish they just said “You know what, I don’t know.  Why don’t we try to find someone who does.”  I want doctors to know how traumatic some of their reactions and some of their practices can be.  I want doctors to be empathetic and to slow down sometimes.  There’s a lot of problems with the healthcare industry.  I know they need to go fast and meet their quotas. But, we are people and some people are really suffereing with things and we need some time.  What I love about my doctor now is that she really, she doesn’t tell me to “relax”.  You don’t tell someone if they are scared or if they are anxious to “relax”.  She will coach me through my breathing.  She will just wait.  She will talk about something else. When she does that, it makes things so much more bearable.

13.  What do you want others with pelvic floor issues to know?

Shelby:  I want them to know that they are not alone.  I mean, the more I put this story out there, and I feel that it’s still at the beginning, the more I realize how true that is.  That is really empowering to me.  I wish I could really communicate that.  I wish I could [sigh] give that piece of mind to people who feel really alone. I want them to know that there is treatment out there and everybody needs to find the treatment that works for them.  Usually it takes a team of professionals and it takes time, but I believe that everyone can eventually find what they need.

14. Where are you now as far as your pelvic floor issues are concerned?

Shelby:  I am, I kind of mentioned this earlier, I’m kind of coming out of physical therapy and counseling.  I don’t have to go as often now, I’m kind of at a maintentance point instead of trying to progress – which is really cool.

I think my anxiety has gone down quite a bit.  I think telling this story and talking about it has been so healing.  My counselor has been really supportive of it, just for what she does in helping me do this part of it.  Things are going really well for me and I think by putting myself out there and putting my story out there I’m being my most authentic self. I think that when you are your most authentic self you set yourself up for your best possible self. The universe kind of provides a little when you are giving your best.

15. What else do you want to share?

 Shelby:  What else do I want to share?  I guess a lot of people call me “brave”, which, I “get”.  I would say that to someone who was doing the same thing.  It does take a lot of courage, a lot of strength.  But, really, it comes down to – I don’t really feel like I’m being brave.  I feel like it’s just something I have to do.  I’m kind of like, “called” to it.  It feels right, it feels like the right time to do it.

I’m proud of myself for sure.  I wish I could go back in time and hug the fourteen-year old version of myself and tell her “It’s going to get better.  It’s going to be crazy. And you’re going to tell people about this.”  For a long time it was my deepest, darkest secret.

I guess, just, I really, really care about getting this story out there and making this film.  It’s going to be a great film.  I really appreciate anyone’s help in getting this out there.  Sara, I really appreciate you writing this blog.  I appreciate you coming on as an associate producer. I’m really excited to see where this goes.

My continuing education company, Alcove Education, is acting as associate producer because we could not not attach ourselves to this project.  Shelby is currently raising money to complete this film which is a fifteen-minute visual essay.  If this film project touches you and you have the means, please consider a donation of any kind to her Kickstarter project here. (<— click this word) If you don’t have the means, but it still touches you, please share the trailer here. (<— click this word) If you want to read the essay she wrote for BUST magazine, you can find it here.  (<— click this word) If you feel that she speaks to your situation, please show the trailer to your healthcare providers.  It will give them a glimpse into your experience.  That’s all we can really ask for, right?  In life.  Some sort of empathy.  Some sort of shared experience.  Some sort of validation.

If you have any questions, please leave them anonymously in the comment section below or email me at Sara@Sullivanphysicaltherapy.com

6 thoughts on ““I really want to create a community.”: Interview with Shelby Hadden Part 3”

  1. I am so glad you have the guts to make a movie about this condition, & the intelligence to realize that there is NOTHING shameful about having vulvidenia. I didn’t realize that many women get it as young teanagers. That’s because, before I got Rectal pain, after a colonoscopy, I had no idea there was such a condition. Even then, I thought I was the only person in the world who had a condition that caused Rectal pain (16 years ago). I only learned there was a condition called Pudendalmznueralgia until a few years ago.
    Education & awareness is the beginning to find a cause & solution to these types of conditions. I only recently realized that most people with pudendal Nueralgia, actually have mainly vulvidynia, & only some have rectal pain. We need a organization, that accepts donations, so that money can be used for research to help developed cures for these conditions. How does one start a organization that studies these conditions? Most medical conditions have organizations that raise money to do research. How can we do the same. Thank you for raising people’s awarenes of this disease. You’re taking the 1st step to awareness. There are a lot of conditions in this world, which don’t get research, because others aren’t aware they even exist. Thank you for helping me & every other person who lives with a pelvic floor condition

    1. Adele,

      This is the first time that I have read or seen that rectal pain can be part of Vulvodynia. I have IC, Pudendal Neuralgia, Vulvodynia and Pelvic Floor Dysfunction. All of this happened 9 and 1/2 years ago and still continues today. Numerous dr’s, procedures, etc. The rectal pain has been there from the beginning. That and the IC give me the most pain. Do you have any other information about the rectal pain being associated with Vulvodynia. I am so happy that someone has brought all this to other’s attention. I plan on sharing the trailer. Thank you Shelby and thank you Sara for doing the interview. I cannot help monetarily, but I would share any of my experiences with these unbelievable illnesses. Who ever heard of such things. Not me, until I was stricken with them. Pain is the worst thing of all. I hate pain, pain hates me.
      Thank you.
      Carol

    1. Hi Phyllis,

      A good work up by a knowledgeable physician or a good evaluation by a knowledgeable pelvic floor physical therapist should be able to answer this question for you.

      Sara

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