Meet Allison, one of your 2015-2016 PatientsLikeMe Team of Advisors. Allison is living with bipolar II, has been a PatientsLikeMe member since 2008 and is a passionate advocate for people living with a mental health condition. Refusing to let her condition get the best of her, she partners with her family to self-assess her moods and tracks her condition on PatientsLikeMe where she’s been able to identify trends. She also gives back to others through her advocacy work on the board of directors of the National Alliance on Mental Illness (NAMI) in Dallas, where she lives, and currently with the Dallas police, helping train officers with the Crisis Intervention Training (CIT) program. Additionally, she works with the Suicide Crisis Center of North Texas helping to implement a program called Teen Screen and has shared her story of living with mental illness to groups and organizations all over the state of Texas. She even testified to the Texas State Legislators about the importance of mental health funding.
A former teacher, Allison is going to graduate this November with a master’s degree in counseling. Sharing about her journey with bipolar II has enabled her to live a life of recovery. This has also fueled her to empower others to share their own stories.
Below, Allison talks about her journey, advocating for herself and reaching out to others.
How has your condition impacted your social or family life?
Living with bipolar/mental illness has had a huge impact on every part of my life, social, family and work. My family has had to learn (along side me) how to cope with my changing moods. My moods do not change instantly but they can change within the day, week or month. When something triggers a mood change for me, and that trigger can be unknown, my physical demeanor can change. When I show physical signs of changing, such as withdrawing and I am starting to isolate (a sign of possible depression) or when my speech picks up and I start to lose sleep (a sign of hypo-mania) my family will ask how I am feeling, without being judgmental, as a way for me to self evaluate my moods. I have lost many friendships due to my depression. When I have isolated for months at a time some of my friends have stopped coming around. Nobody calls. It seems like I have nobody in the world to turn to and that just adds to the darkness of depression. I have learned it is my responsibility to let people know what I am going through so that they can be there for me when I need them most. The hardest part of this is letting people know that I live with this thing called bipolar and I need help from time to time. It is very frightening to be vulnerable because I do not know if people will be willing to stay with me through the ebb and flows of my illness.
Recount a time when you’ve had to advocate for yourself with your provider.
There have been a few times that I have had to advocate for myself while living with bipolar/mental illness. The one time that I will never forget and took the biggest toll on my well being was dealing with my insurance company. There is a medication I take that is VERY expensive and there was not (and still not) a generic form of this medication. There is however a medication that is in the same family/class as the one I need to take. The problem is, I DID take that other, much cheaper, medication for an extended amount of time and found myself in a mixed episode (when I was hypo-manic as well as depressed at the same time) and I was close to hospitalization. My doctor wanted me to try a medication that was fairly new on the market. To my surprise it was the medicine that worked for me. I became stable and life was good for a long time. Earlier this year (2015) my insurance company wanted to put me on the older medication, due to the price of the current drug. I explained the problems and asked that they reconsider their decision. I was devastated when then informed me that I would HAVE to go back to the old medication or pay out of pocket for the newer medication. My husband and I decided to dig deep into the wallet for a month and purchase my medication while attempting to appeal the insurance companies decision. We lost the appeal so I went back to the medication they chose for me (because I could not afford the monthly cost of the newer drug). It was no surprise when I started to feel the effects of the cheaper medication and felt like I may end up in the hospital because the depression was getting too bad for me to live with. I made another appeal and this time they told me the expensive drug was out of stock but when it became available I could have it. With relief in the air I dug into my wallet, yet again, to purchase another month of the newer drug to get me started until it became available. To my dismay they told me it was STILL on back order from their distributor. I am fortunate enough to have a friend who is a pharmacist in that part of the country, so I called and asked her. She did the research and found out it was never on back-order, but there may have been a recall for a different dose many months earlier and that should NOT have effected my request. I immediately contacted my insurance company with the facts I found out through my research and without question, I had my (expensive) 90-day prescription delivered to my door the next day with signature required. There were no questions asked. It infuriated me that I had to do that much work and put my mental health / well being in jeopardy for the sake of the dollar. Not everyone can advocate as I had to do, so when I can I will step up and help those who struggle and do not see a solution to their problem. I know how that feels because there was a period of time I did not feel there was an answer to my problem until I had to be creative and advocate.
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
Words cannot explain the importance and the role PatientLikeMe has played in my well-being while living with bipolar and mental illness. I do not even recall how I found PLM in 2008, but when I did I started my work right away. I started charting and graphing. I have to say, part of it was because it was fun to see up and down on my graphs after a few days. Then it was a challenge to get 3 stars. When I fell to 2 stars I was frantic to get my 3 stars back and then it started to really come together for me. I started to see my actual mood cycles. After a few years I started to recognize my mood cycle in March and it is a time of year my doctor and I start to become proactive ahead of time. After all of these years I cannot possibly remember when I took a medication or why I stopped taking it. Now I am getting much better at giving myself better details about each medication, which in turn helps the community, as a whole, learn more. PLM has supported me emotionally by standing by my side as I do fundraising walks in my community for mental illness and suicide prevention. PatientsLikeMe has made generous donations on my behalf, sent team shirts for us to wear and in return I have been able to spread the word about PLM and what a difference it makes to me and thousands of others. I feel honored and blessed to be on this year’s team of advisers. I want to help make a difference in the lives of others, like PLM has done for me.
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