Having peer support can be helpful

When Christine Thelker was first diagnosed, she questioned her ability to make decisions, and allowed others to make decisions for her instead. Because she was told she had an illness that would affect her cognitive abilities, her self-confidence was eroded. She was not sure any more about who she was, what she wanted, and what she was capable of. 

Overtime, she found that place where she could tell herself,

I’m still okay; I can still do that; I can still manage this; I am still a good person.”

 It took her getting angry about losing her independence and sense of self to propel her forward in her quest to regain her self-confidence and sense of self. 

Christine told herself repeatedly that she was good enough, and eventually she started to believe in herself again and her self-confidence was restored. In her journey to rediscover herself, she did some research and found many ways to help herself. As an example, Christine was involved in peer-to-peer support groups. These groups are “very real and the peer-to-peer is a place of real honesty where people really talk about those things. There’s laughter, there’s tears, there’s all of those things, and you discover through all of that, that there is life with the illness.” 

Christine eventually began writing a blog (Chrissy’s Journey – https://chrissysjourney.com/). This helped Christine recognize things within herself. She began hearing from people who read her blog. They told her stories of how her writing helped them along their journey of self-discover; this in turn helped Christine to keep a positive attitude and helped with her own positive self-talk. 

Christine suggests that those who are newly diagnosed need to get involved (e.g., advocacy groups, grass roots organization in your own community or internationally) and reach out to others who are living with dementia, for peer support. In doing so, they will realize how much living there is left to do!

Peers that Christine has met since her diagnosis have become an important part of her social support.

These quality connections she has made are deep, meaningful, and so unique – “there is a true understanding of each other’s experiences.” These connections also helped her own self-confidence and positive self-talk. After her first peer-to-peer support group meeting, she remembers thinking “I felt like, wow, I’m not alone and I’m okay.” 

Another piece of self-talk is learning to like who you are now, according to Christine.

I’m not the same person I was before I was diagnosed and I like myself more now as a person than what I was like before, because now I focus more on kindness and caring about others and I’m not so focused on all the things, like career, that we think are so important that really mean nothing at the end of the day. I find joy in little things, like being able to go for a walk.” 

She used to beat herself up for making mistakes, like forgetting appointments or saying something wrong, but through positive self-talk she has learned to forgive herself and move on. She says learning to laugh at yourself and learning to live with her missteps was so important to help her see what is truly important at the end of the day.  

Christine truly believes that if she had been given hope and knowing that she still had purpose when she was diagnosed, she would not have struggled in this way.

When you just tell people to go home and get their affairs in order, you take away their confidence; you take away their sense of self and you walk away so unsure of everything and of your own abilities because you are told this is what’s going to happen.” “That first important piece at the doctor’s office is so vital. They can give you resources and help guide you and help make you understand that your life will be different, but it’s not over.” 

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