13 posts tagged “bipolar II”

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.

 

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Patients as Partners: Allison shares her insight on teaming up with organizations

Posted June 15th, 2016 by

Allison (center) receiving the 2015 “In Our Own Voice” Presenter of the Year award from the Dallas Police Department

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See what she has to say about the two principles that she relies on most in her relationships with these organizations, and what she’s learned along the way: “I realized I could use MY voice to help others.”

Can you tell us a little about the different organizations you’ve partnered with?

I have been working as a volunteer with NAMI Dallas. NAMI is the National Alliance on Mental Illness. I was on the NAMI Dallas board of directors. NAMI has affiliates in every state. They have programs for family members and for people living with a mental illness. I am a volunteer scenario trainer for Dallas Police Department. The scenario training is part of a 40-hour class that the officers take, focused on Crisis Intervention Training. I am certified to run support groups for DBSA (Depression Bipolar Support Alliance).

How did you initially get involved?

After being diagnosed with bipolar, I wanted to find other people who were living with similar conditions. I started attending support groups and taking classes at my local NAMI and DBSA organizations as a way to find support and learn about my mental illness. After attending many NAMI meetings I was asked if I would go to training to become a support group leader. Shortly after starting new support groups I was sent to St. Louis for training to become a teacher for their program Peer to Peer.

I also took a class that NAMI offers called, “In Our Own Voice.” This class helped me put my life story together so that I can organize my thoughts to share my story with others. After a few years of teaching and leading groups I was asked to tell my story to a group of firemen. The firemen and women were new recruits and I was there to give them some insight about mental illness and ways to be helpful when faced with mental illness calls. That talk was the beginning of something new for me. I realized I could use MY voice to help others.

I have been volunteering with the Dallas Police Department each month by doing scenario training. We create scenarios the law enforcement officers encounter on a regular basis. Our goal is to teach them new ways to work with people who show signs of mental illness. At the end of the week I share my life story with class of officers. It is an amazing experience when I have the chance to work with them and then share my story because they have no idea, all week, that I am a person who lives with mental illness. I was awarded the 2015 In Our Own Voice presenter for the Dallas Police Department, and that was a very memorable moment for me.

What are the dos and don’ts you’ve learned about how to effectively share your story so people will listen?

I have learned to share my story only when people are interested, if I am asked, or if I feel I will be helping someone by sharing my experiences. The most helpful thing I did to get me started telling my story was to take the “In Our Own Voice” class through NAMI because it helped me learn how to organize my thoughts. As time has progressed I have learned how to tailor my story for the specific audience I am speaking to.

Allison volunteering as a scenario trainer for the Dallas Police Department

Have any of the Partnership Principles you developed with the Team of Advisors helped you in your work with organizations like NAMI or the police department?

I would say “Respect each Partner” is something that resonates with me as I think of my journey. I have learned when I need to say no to a speaking engagement if I am feeling overwhelmed. I feel very fortunate that the wonderful people at the police department understand and respect me enough to not push me to over extend myself. They are actually better about making sure I am not overextending myself than I am.

“Reflect, evaluate and re-prioritize” is another partnership principle I live by. I have learned it is okay to move on when a relationship is no longer working for the good of both parties. I remember how difficult it was to step down from my position on the NAMI Dallas board of directors. I had been serving for over two years and felt that I wanted to put my energy into my training. I realized in order to stay healthy, I cannot overextend myself, and that meant giving up something if I wanted to take on a new role.

What advice do you have for other patients who want to learn more about partnering with organizations?

Be creative! I NEVER imagined what attending support groups was going to do for me. I would never have met some of my closest friends or had the opportunities to work with some of the best organizations if I didn’t go to that first meeting. Each time I tell my story, it helps me work on my recovery to a healthy life. I encourage everyone to try something new and see where it takes you. You will probably be surprised.

 

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