124 posts in the category “Fibromyalgia”

Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

Share this post on Twitter and help spread the word.


PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375