Do Not Be Afraid to SPEAK UP & SPEAK OUT!

When you were first diagnosed, what thoughts came to your mind?

Fear?
Anxiety of the unknown?
How will this affect my family?
How will this affect my job?

These thoughts are common for anyone newly diagnosed. But one thing I have noticed amongst my lupus community is the growing number of patients who fear speaking on how they feel with family, their physician, or even their management team member at work.

Any diagnosis is a lot to take in and understand. But one thing that we all possess is the power to understand or explain what our body is experiencing. There are so many emotions that come with a diagnosis and if we do not verbalize what is going on, how can we expect others to understand? SPEAK UP.

Trust your body! Listen to your body! Do not be afraid to explain how you feel or reveal what is going on with you physically or mentally. YOU ARE YOUR GREATEST ADVOCATE! SPEAK OUT!

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I could have died 2 years ago when I went to the ER with bloody urine with clots and they wanted me to go home with an indwelling catheter and see a urologist in the morning. I refused and just had a gut instinct that I would not be safe at home. I would not sign any discharge paperwork until they could make sure I could go home safely. They never could! I live with my two adult sons and didn’t know how I would unclog the catheter from clots? I was eventually seen by a hospitality who admitted me and I was in the hospital 4 days, had IV antibiotics and blood transfusions. I will never forget the nurse who was so irritated because I wouldn’t sign her discharge paperwork. I will always be grateful that I stood up for myself!

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I went a few years of undiagnosed RA because people would just say it was the field of work I was in and that I was too young to have anything really wrong with me. Boy were they wrong once I got a new primary care physician who saw all the pain and swelling I was having. Not to mention some GI issues I was having, but was too afraid to mention them to my old PCP because of all the dismissals she was giving me. My new PCP started giving me referrals, and would often check in on me randomly to see if there was any new symptoms popping up because she knew the struggle I had previously with doctors. And thats when I learned to mention all the issues or symptoms I have to make sure all my bases are covered. 3 years after my RA and IBS diagnosis, I was still having some lingering neuropathy and weakness popping up and she sent me up to neurology and we found another condition, Chiari Type I. I’m so thankful for pursuing a new doctor who helped empower me by giving me confidence to speak up about even the smallest of issue, because you never know where that will lead you.

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I just wanted to say i love this thread because I Iive by SHOW UP. STAND UP and SPEAK UP. so I just wanted to drop some love in here.

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Promoting authenticity is the key to be heard. I encourage everyone to work on finding their voice in the way that works best for them, and their cause.

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This is so true! Authenticity also shows how very different patients can be, so the representation can be important to others seeking a community or advice.

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I have Anxiety like all the time, and it has stopped me so many times doing things I have wanted to do… But now Im trying to not let Anxiety stop me anymore so I can speak out about PCOS.

Great read, when I speak out I get called crazy all the time. Its hard to speak out when you have a tag over your head calling you a crazy person.

It took me several years to get an official diagnosis. So when I finally got it I was actually relived to know that I had endometriosis. My life had already been changed several years ago.

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I have Anxiety like all the time, and it has stopped me so many times doing things I have wanted to do… But now Im trying to not let Anxiety stop me anymore so I can speak out about PCOS.

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That is so true. No one can advocate for us better than ourselves. It is important to let family and friends know about our conditions. I also will tell my doctors what I think I need as far as testing etc. They all say that I am a very informed patient. They would love to see other patients as organized as I am in regards to keeping detailed notes on my care, procedures, and medications.
And for those newly diagnosed, we have been through it, so we can help them along the journey.

I have always felt, even if a doctor may not be “supportive” of my opinions, to alllow myself to voice them.

It’s not worth speaking up or out on this site anymore.
I’ve moved my advocacy elsewhere.

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Are you still here? I saw your posts on the other thread that got closed

I’m only waiting to see if my questions ultimately get answered here or not & for the transition to whomever now owns & runs this site to be complete so I can decide whether or not to close & delete my account here,

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I’ll add in a reply I wrote on another one of your posts just to keep it all together:

“I feel the same way as S.E Olson. I was worried about the merger too, and it feels like my fears really came to fruition - actually worse maybe. The platform no longer feels like something designed to help patient leaders advocate for change for patients. Any activities that help leaders do that are left over from when the platform was WEGO Health. But now it seems like this platform is going to be used to recruit and pay patient leaders to pedal products & drugs for the healthcare industry & big pharma. This would be taking advantage of patient leaders and the precarious financial situations they’re often forced into, taking advantage of patients and their trust in their patient leaders, and eventually ruining the credibility of patient leaders all together. There weren’t many places out there for you if you wanted to really try to help make a change to the ethical problems within healthcare systems. But WEGO Health was the one platform I trusted to help me do that. But now it seems to me to have turned into just another way for big companies to use and take advantage of vulnerable patients under the guise of helping them. It’s a real shame. And please don’t reply with the dismissive “change is hard for everyone” stuff like you did with S.E. Olson’s thread. Patients deal with enough dismissiveness as it is, and. I personally quite like change. Just not THIS type of change.”

I’ve been watching from afar for a while and I’m concerned about what looks (to me) like could be about to happen here. I don’t want patient leaders to lose credibility (in the same way that influencers did), because patients have so few people they can trust - their own healthcare providers often not even being amongst those people.

Do you happen to know of any other sites similar to what WEGO Health used to be like? I’d be keen to at least spread the word about somewhere else for people hoping to become patient leaders in the future (and find somewhere else for myself)

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(When I say “watching from afar” - I mean watching as the patient leader benefits and true opportunities disappear, as well as reading the marketing emails designed to attract healthcare companies to the platform because of the patient leaders they have (and the trust patient leaders have build up within their communities, i.e., so their communities will believe the patient leader when the leader recommends a product).

See https://health-union.com/blog/social-media-in-healthcare/
or this one https://health-union.com/featured-blog/influencer-marketing-patient-leaders/

Compared to the things like the quarterly patient leader networking calls which apparently don’t exist https://platform.wegohealth.com/forum/t/attend-quarterly-networking-calls/455 , or the changes in the reward system you were talking about.

It feels to me like the site was essentially bought for the directory of patient leaders information.
I notice we can now add which medications we take to our profiles too, as private information. I don’t remember that being there before - I wonder who that might be for…?

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I advocate for caregivers of people living with dementia as well as people actually living with dementia. There are no drugs for this family of conditions (over 100 causes), so while somewhere down the line there might be drugs to try, I’m not interested in shilling them or blowing my carefully built over many years reputation & credibility in the caregiving & dementia communities as an ‘influencer marketer’.

I’m still interested in courses & networking, but I’m no brainless or soulless ‘spokesmodel’ for anyone & definitely not for ‘social media shoutouts, logo T-shirts & extremely limited donations to the charitable advocacy organization of my choice’

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Hi @SEO. Thank you for sharing what you’re interested in seeing. This will always be a place for courses and networking, and we hope that you will continue to find what you are looking for on this platform.

Hey @sarah.williams! Thank you for chiming in here to express your concerns. It sounds like more networking opportunities are something that you’d like to see and this is on our minds. We appreciate you being here and offering your feedback.