Awareness – The bigger picture

I woke Monday, to see that the Loose Women #mybodymystory campaign I took part in on behalf of the Colostomy Association, had been replicated by another photographer. This photographer has since been invited onto ITVs Loose Women, to discuss the topic of body confidence and OUR photo composition & content. I’ve been very upset and this has been questioned. I’ve dealt with people who have disagreed with my upset, MY upset! Because all awareness is good awareness right? 

I think the ladies in the shot look amazing! There is no denying that they are brave and beautiful, and represent a variety of women. My upset should bare NO reflection on this. These women are admirable BUT this does not excuse that the photographer took credit for someone else’s idea and therefore denied hardworking advocates, the opportunity to discuss their causes. In my view, if I was paid in any other professional role, and for example this was a written piece, I could cite plagiarism and be supported. For me it goes beyond the awareness aspect and onto the issue of my time and effort. 

So let’s talk about my time. My time is precious! I am sick. I rarely get a good day lately. I miss out on time with my family and even when I do get a good day, I often find myself catching up on my blog & other social media platforms. I have around a 5k following & 30k avg reach across all social media. I run my community support group, 3 online support groups that I created (that contain almost 3K members across them). Then there are my emails. Correspondence from various organisations, enquiring about writing & campaigns they wish to involve me in. I also regularly read up on research. Research that I’m either involved with (currently in 3 programmes) or am interested in. I keep my mind actively learning about all things IBD & ostomy related, so I can better help others. Recently I’ve even been reading up on other ostomy related conditions. I may not be a Doctor but it’s amazing what you can study alone in 12 years.

‘Sick, tired and fed up’

I’ve had to cancel and turn down work lately because a) I’m too sick or b) I have no time or c) I have no confidence right now! Some may think I’m home all day so have all the time in the world. Quality, clear headed time comes rarely, yet I’m nose deep in support work 24/7!

So back to the shoot. I was very unwell the day of the shoot, which was a 14 hour day I might add. I was dubious about working with a tabloid paper to begin with and discussed this with my fiancé and Clare at the CA. I had to weigh up the pros and cons. Would it be done well? Would it be done right? What text would they include? Would they sensationalise it? Would it hurt my reputation? Would they make a donation to the CA? Would it compromise any other commitments/contracts I have. After looking at these, I could see one big pro for me, and this was the possibility of being able to further discuss ostomy awareness on the Loose Women show, or maybe elsewhere. I also really wanted to represent the Colostomy Association and all the incredible work they do! 

Now I knew the Sun would include very little information about ostomies, but it could open the possibility of other media platforms to start that narrative. I was putting myself out there as a face and voice for those who cannot. For those who struggle with body confidence AND all the turmoil that comes with having ostomy surgery. I wanted to open channels so that I can tell the whole nation why ostomy is NOT a tragedy. I want to represent every other advocate that works day and night, telling new ostomates that their life isn’t over and it WILL get better. I want to embrace those that are standing infront of that mirror, sobbing because society has led them to believe they can’t be sexy with an ostomy (please go to http://www.sobadass.me to view Sam Cleasby’s talk on body confidence – it’s spot on!). 

4am wake up!

I may be a big mouth but I believe my mouth is the right size for this job, my knowledge is enough and the love I have for my ostomy and YOURS, makes me a good person to smash the negativity…so I’m struggling to understand why some have been so unkind lately?

As you can now tell, I’ve been feeling incredibly deflated. I’ve already spent the past month building my confidence back up (after someone stripped it away with similar false assumptions) and now I’m right back there, feeling hurt. Up until the past month, I have NEVER questioned why I chose to advocate, nor have I been questioned prior to this. I shouldn’t have to justify myself, or prove why I advocate. Surely the evidence is in my work? I didn’t start this page to just blog about my life, about ostomy products or my skin. I always had the bigger picture in my mind.

I am very conscious that I don’t start knocking out repetitive, endless blog pieces & add to a currently saturated community. I don’t want to water information down, I want to support and circulate what’s reputable and already there, whilst occasionally offer new content. I’m not competing with anyone and I have my own directory style. I want to offer new angles and discuss new topics in a way no other person will. I want to make a difference on a bigger scale and just be myself in the process. I have ambition, what is so bad about that? For me quality outweighs quantity when it comes to awareness and if I can reach more people by aiming high, then that’s where I want to go (thank you So Bad Ass for the inspiration). I should not have my integrity or reasoning questioned, when I’m literally so exhausted that I’m blowing out of my non existent asshole!

I support people one to one, which the public does not see. My inbox never stops and this is the way I like to help others and I have all the time in the world for those in need. I’ve spoken with some of the most brave and inspiring people and it’s an absolute pleasure. This role is far more rewarding than any paid 9-5 I’ve ever had. Yet blogging has started to make me a bit miserable. My idol Thaila Skye responded to my tweet a few days ago, and it really made me think. She said ‘there are far too many people ‘being’ advocates that the hard work gets drowned out’. I wasn’t sure if that meant me too, but since I have the 2nd largest UK following and am up there with Thaila and So Bad Ass, I’d hope not. I’m not ‘being’ an advocate I’m actively DOING advocacy. As I’ve said before, blogging does not automatically mean you are advocating. Advocacy goes far beyond offering your view on aspects of IBD/Ostomy life in my opinion, it’s about being there for patients, being out there representing them and working with or against the system to ensure better care. Right now I’m part of an outpatient programme trying to improve how IBD care is structured, I’m involved in 3 research projects, I overlook publications and give my views on if they correctly inform/represent, I’m doing a talk at an art exhibition that’s representing all people with a chronic illness, I’m planning an event with an ostomy company to fundraise and support younger ostomates and I’m getting topics out there that no one wants to touch. This is just part of my list and definitely not including my future plans….so do you now see why I got upset about the replicated image? The campaign may have been about all body types but I was there to represent US as ostomates, represent YOU in the hope of opening more channels to make bigger waves. However having another ostomate doing it instead, completely drowned out the hard work I put in to get there. Work that I do continually.

I believe some will see this as nothing but jealousy but I assure you it goes beyond anything as petty as that. Body positivity for some of us goes far beyond skin deep. I’ve seen people say that these ladies should be praised for being there and it doesn’t matter who did it. It matters to me because they don’t represent me. For me this campaign was about the trauma my body has been through. The PTSD I get when any Dr goes near my body, the fears of what I’ve faced, the medications that have destroyed my confidence, the sadness I have felt at every step, the look on others faces when my body changed and the fact that this body, flesh & bones that merely serve to hold our internal organs felt that ugly, broken and insignificant, that I wanted to not live in it anymore. I wanted to die.

So Maybe some CAN’T ever get why I’m not entirely ok with ‘well at least someone did it’…because most of them are lucky enough to have never been so sick and those that have, didn’t convey THIS body message. The message I had planned to discuss in relation to why I did the original shoot. When your body is broken, you question your mortality. To me my ostomy is a sign of how amazing this body can be and it wasn’t only about image but for me it was about functionality too.

I was shocked to receive comments questioning my upset and comments implying, that if I’m upset I must be doing advocacy for the wrong reasons. It’s NOT just about me personally but professionally. It’s not about simply going on TV, nor about getting praise. It’s about how watered down some of our work becomes, when an individual decides to do a one off campaign or article…usually on a whim! Patient experts are so valuable. In the US they are sponsored by Pharmaceutical companies and can be hired, to represent the masses and guide them through a rough system. It’s no different here yet we rarely get the money or credit we deserve. In my opinion it’s a special role just like any other full-time PAID job. Because US citizens have to pay for their care, the medical professionals give them an incredible amount of respect. This is because patients are directly hiring them & advocates can very quickly review any bad care and make it public knowledge. Patients look to advocates to guide them through the issues with insurance but also to translate info on the latest research and movements in the IBD/ostomy world. THIS is what I do on a UK level. So why as an advocate would I NOT be upset, that a patient appeared on national TV & wasted the opportunity to REALLY discuss ostomies & body confidence?! I believe it’s my job to care and be upset. As an individual…human being, it is also my place to be devastated that I worked hard and a photography business robbed me of a fantastic opportunity and experience.

Awareness is a cause, that I believe will get across better through quality and not quantity. Advocacy isn’t some fun that brings opportunities, nor is it only about sharing our stories. That is important, but it goes beyond that. It’s about inspiring many and pushing for change. Think about what happens when someone who doesn’t advocate has their story published in the paper? It’s inspiring to read and if it’s something you’ve never seen before, you may absorb the information. Now think about the kind of information that is included. The journos write what they want and what they think the reader will enjoy, and not always the correct facts. They only care about readership and too often that leads to sensationalism. They don’t have to care for the cause and without the person in the story caring about content )and then going out an working incredibly hard in conjunction with said story), it soon gets forgotten  This is why up until the Sun campaign, I had only agreed to do articles via my friends and local journalists. I trust them and they know how important this work is to me, so they include detail and discuss it with me before going to print. I haven’t not had the opportunities, I’ve just selected wisely! Others don’t always select wisely or they want to be in the paper for a photo opportunity (you can tell these one’s a mile off). So BAM…more misinformation out there for the public. A forgotten story and a wasted opportunity, much like the outcome of what was said on Loose Women today. I was messaged by more than one person, informing me that the ostomy topic was brushed over and ended with the view that having an ileostomy is no biggie & a cure for UC. An advocate wouldn’t have allowed this!

By saturating the media with misinformation, regular, decent advocacy work can get missed. When the public or IBD/Ostomy community spend all day sharing a sensationalised newspaper article, it’s time wasting in my opinion. What point is it when the article is poorly written and the subject cares nothing about awareness and only for their story? It may circulate repeatedly and new ostomates or diagnosed sufferers of IBD, may read the poor info and take it as gospel. Much like articles that do the rounds about miracle cures. 

The false hope sensationalised articles spread is deplorable. This is why I only read from certain sources and I urge that others do not share anything unless they know it’s FACT or the info is written correctly! Just because someone is in a bikini, doesn’t mean they are doing it for the community. I’ve heard about one individual that only featured in an awareness article, in the hope of getting a modelling/acting career. I have nothing against the ambition to model but don’t pull on heart strings and USE an important cause for your gain! That is so not my style! I love working with Vanilla Blush and I felt all silly and girly on the underwear shoot. It was a dream to try modelling but by no means have I ever sold my story, or my soul to a paper, just to get a gig. My local news approached me after the VB shoot and it was the first time I’d got giggly about being in my pants. I live on an island so was worried I might be recognised as the girl in the pink pants. It’s not often we have that kind of picture in the Sheppey Gazette 😉

I have turned down well paid opportunities, that could have given me a career because I won’t ever be a sell out. Kudos to anyone who shares their bag photos personally. I am always inspired by those who embrace their body or who share in the hope that it will boost confidence and empower them. Almost 100 people sent me pictures to tweet for the Loose Women campaign. That’s amazing! 

So what I believe is that IBD sufferers and ostomates should follow active advocates, charities and organisations, (US, Canadian and AUS ones too) to have access to the right info. Groups like IBD Superheroes are continually offering the latest info and I know they research before posting anything. GYBO & CCUK work together and you can follow the latest news via the CCUK website. Ostomy Connection and The Mighty share some great articles too, not just on physical but mental health too. You can also write for them yourself, so sign up and share your story, so it can reach the right people. Eakin have a blog and appreciate anyone who can write to share views on various topics. Clinimed also have many bloggers on their page and all is takes is an email to see if you can contribute. It may not be regular but they often have pieces drop out last minute. Who knows you may be great at it?!

It’s good to write pieces and have it edited by those in the know. Share your belly/bikini photos via an advocate, charity or organisation in the industry. Use media platforms, that have the platform to share it far and wide. If you were to do it via a national newspaper, ask their intentions, proofread their words and if unsure ask someone in the know to check it. Don’t just put any old shit out there, especially on TV!

I’ve rambled lots but I’ll repeat that my upset ISN’T ABOUT ME but more about established following, it’s about utilising the following I have built up through constant advocacy over the past 18 months. Utilising all big media platforms to raise correct awareness….together! Rather than starting new info blogs, use what already exists and publish via them. If it’s about the cause then that should suffice. If not then what is it really about? Just do a personal blog. I’d be quite happy to never speak about myself and share nothing but patient stories. In my opinion, this community needs more people to get behind advocates and help us to make big waves…not spread it thin & create little puddles. 

I really do believe we make our own opportunities and should be able to be proud of what we achieve in life. On a personal level I’m quite sensitive, even though you all see is my strength and confidence. All I want to do is help people but whilst being allowed to be honest. I dislike people that say things privately but won’t say them out loud or to people’s faces. ANYTHING I say in private about a subject or person, I would say to their face. So please, if you dislike my work, dislike me or misunderstand me, either say it honestly or just don’t follow what I do. I don’t like to see people being judgemental when you  have a choicd whether to read what *finger on lip pondering*. Hmmmm

I may not have been the first to blog but I am one of few UK advocates in this area. I have worked hard and more than proved myself to be up there with the best, whilst not compromising who I am. I have not imitated anyone because I’ll always give credit for my inspiration. There’s nothing worse than reading something that’s not in that person’s style of phrasing, but YOURS. 

I adore the following that I have built. So many wonderful people message me, support me and listen. As a face and voice of a big community, you put yourself out there because you want to – but not to be abused, misunderstood nor copied. I’m incredibly proud of all I’ve achieved so far and this does not make me a big head, it simply means I have confidence in my ability. As long as those that ask for my support, those that I respect in the industry/community, those that hire me & those that believe in me, are happy with me…then I’m succeeding and will ignore petty negativity. 

I admire anyone who is out there actively advocating for patients because it’s hard work. If you give your time to visiting patients, public speaking, open days, conferences, run online support groups, support your local IBD/ostomy department, volunteer & support charities, do events and more (all whilst sick, maybe bringing up kids & trying to have a life), then you have my utmost respect!

I also admire those that tell their stories. Sharing your journey and views on ostomy life/products, gives other patients something to relate to. It’s not only vital that we have reputably sourced information out there but info that connects us all as people. We ALL hurt, we have ALL been through something really tough. We ALL need to stick together…but in addition we must ALL have zero tolerance on hatred. We must utilise the means to get word out there but do so wisely and use the best channels where possible. We must continue to use our own media pages to share our stories amongst family and friends because they need to understand too. We must be united!

I’m just about done with negativity and misunderstanding. I’m fighting my own body, seeing petty bullying and drama in the online groups, cliques formin, whilst all the time I’m trying to do something good and not be part of the negativity. Yet people insist on cutting ME down and not those that darken our community. What is this, a playground of popularity Community drama, bullying and sensationalism needs to stop. Admins of groups must be respectable and have decent guidelines to prevent drama & bullying. Friendships should not come into it. If someone is a tool, a bully or a troll…then warn or remove them. It’s not a nice place for everyone else otherwise. If the admin are the problem, then find another group. There are plenty out there and it doesn’t take much to ask for a recommended one. I’ll write about this once my website it complete. So take note of who brightens your community, because that takes a lot when some are so poorly. I see the sickest people, do the most encouraging by far. Life is too short and they only wish to be happy.

I do hope I can go back to being myself amd sharing my ambition and passion, without people misunderstanding me & talking badly about me. It takes very little to offer some appreciation by supporting your advocates. I may not be employed full-time, or have a qualification in the role. I don’t even have a boss to say ‘hey here’s your job title description’, but do you know what…I AM an advocate because I’ve worked bloody hard to be one and all off my own back. I did it because I want every patient to feel they can live happily, confidently and peacefully with an ostomy, whilst knowing where good support, info & medical professionals can be found. 

I lived too long in misery, thinking that it was just the way the system & society is. Well now I know different and can’t sit by and knowingly see someone go through what I did. Does caring so much make me a good person…or a mug? I’ve been on the verge of quitting and going back to my easy life because quite frankly the lack of support from some over this LW photo, has made me feel unappreciated. I’d feel a huge void if I quit but it’s not like I’d lose money! I’m beginning to wonder if all this effort is admirable or just stupid?

Tips to finding credible sources.

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5 thoughts on “Awareness – The bigger picture

  1. I have read your blog and all that comes over to me is how amazing you are Shell and how special you are because after all I believe you have to be a special person to be able to do what you do and to do it so naturally!! I understand how you must of felt when this photographer undermined you but please take the positives out of this as all the ostomates and other people struggling with body image after having surgery will benefit from the media publicity that it has already made. It has helped me and I just wanted to say thankyou from the bottom of my heart and please carry on with your work because you are an inspirational young lady. Lots of love xx

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  2. To be fair the photo shoot from the Sun looked a lot like the Boots positive body image campaign from a couple years ago.. you say you’re upset because the girls who were picked by loose women didn’t represent you. I can see where people are coming from when they say you’re jealous

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  3. You’re doing marvelous work and doing it well. Keep it up! About patients here in the U.S. getting more respect, that might be true for many, but far from all. As a white person and a man, I’m pretty certain I get more respect from doctors than ones who are neither. And if they’re aware that I have an advanced degree, I’m taken even more seriously. As I get to be truly elderly, older than any of my doctors or their colleagues, the respect will likely decline. I should mention that during a few years when I had no insurance and my care was paid for by foundations, the respect was pretty much non-existent.

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