12 posts tagged “advocacy”

“Always know that you are not alone.” Member Debbie shares about life with PTSD

Posted May 30th, 2017 by

As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel.

 

“I try very hard each day to stay as active as possible, both physically and emotionally, always trying to manage my bipolar disorder, PTSD, OCD and anxiety disorder. It’s a lifestyle for me, and it works.”

 

Though she now manages her condition confidently and helps others learn how to do the same, that wasn’t always the case for Debbie. “I am told my PTSD came about from a rough childhood. I grew up in a severely dysfunctional, alcoholic family,” she shared. “I continued the fiasco by marrying an abusive alcoholic. I have also been victim to multiple rapes, molestation and physical abuse, all from people I should have been able to trust.”

Eventually, Debbie was referred by her longtime therapist to a rehabilitation center that was looking for peers (peers are past mental health consumers who now help other mental health consumers based on a shared personal experience). “I spoke with the director, got hired, and immediately started training to become a Certified Peer Specialist,” Debbie said. She now helps others learn the basics of everyday living – making budgets, paying bills, making menus, grocery shopping, setting up appointments, taking medication – she also runs self-help groups on building self-esteem, relaxation techniques, aromatherapy and more.

Along with her work as a Peer Specialist, Debbie also does advocacy work to improve awareness for mental health conditions in her community. She was invited to speak at the Tioga County and Broome County meetings on a range of subjects, from electroconvulsive therapy (ECT), molestation and rape survival, to breaking down false biases based on misinformation on TV and in movies.

As well as her mental health advocacy and her work as a Peer Specialist, Debbie also runs a Facebook group, called My Happy Place, where she shares positive affirmations with her 250+ followers. When asked for her advice on what to do when you’ve just been diagnosed with PTSD, she said:

 

“Always know that you are NOT ALONE. You are not crazy, or over sensitive. PTSD comes from trying to be too strong for too long or on your own, with little or no support.”

 

Debbie says: “Talking about your fears and insecurities with someone who truly listens and does not judge you makes a huge difference. You can learn to accept your fears, work through them and enjoy life again. It doesn’t mean you forget what happened. You learn to get stronger for it.”

Finding others with PTSD

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Meet Laura from the PatientsLikeMe Team of Advisors

Posted March 16th, 2016 by

 

We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus.

Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.”

Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through.

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

My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing.

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

I try to keep it very simple for those that do not understand IPF. I tell them I have Idiopathic Pulmonary Fibrosis which is scarring of the lung…that my lungs will fill up with scars and there is no cure and currently the only treatment is one of two pills that may slow the progression or a lung transplant. Anything more than that and you lose their interest. If they ask for more information I give it, otherwise I don’t.

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

To take a deep breath and learn everything they can so they can empower themselves.

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

Very important! I have a chronic, fatal terminal illness. It’s a very lonely place to be. The only one that understands the shift in moods is someone who is where I am.

 

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