Living with PBC: Finding Strength Through Struggle and Sharing
Jackeline
State: Pennsylvania
Congressional District:
Diseases
Liver Disease, Mental Health, Rare Disease
Issues and Challenges
Jackeline has encountered: Insurance Issues, Invisible Illness, Underserved Community
My Story
It was the year 2019 when I started experiencing symptoms of fatigue, itching on the palms of my hands and soles of my feet, and pain in my muscles and joints. These pains and aches, along with the other symptoms, were not normal for me, but I needed to continue to lead a normal life of working as a paralegal and attending to my family.
I decided to work from home after I was laid off from my job for reasons unrelated to PBC. I had a lot of emotional issues to deal with at that time. Being diagnosed with a very rare autoimmune issue, losing my job, dealing with marital issues, grieving the loss of the things I used to do, along with depression and anxiety, was overwhelming. After seeing all this, I needed to obtain professional help to sort my feelings regarding everything I was dealing with at that time. Later on that same year, I was then diagnosed with fibromyalgia as well. This newer diagnosis added more stress but also explained why I was dealing with so much pain on a regular basis.
I am grateful for my hematologist, who has worked with me during this journey with PBC and has given me a better understanding of what it is that I am dealing with. This is not a death sentence; it is just an adjustment in the way I live my life from this point forward. I have been given the opportunity to share my story at various events, and this has been a blessing for me as it has given me a purpose in how to manage having PBC. For someone else, this is a negative thing, but in the middle of the negative, I have been able to find positive things along the way. By sharing what I have been through, I can encourage others not to give up but to continue to move forward in this journey because they are loved and they are seen. There is a community of people that sees them and cares for them.
My Motivation and Inspiration
My motivation is to be able to spread awareness of PBC to others, especially in the Latino community. I want to be able to help and share resources that have helped me during this journey, especially when I was recently diagnosed with this disease. When I was diagnosed, I did not know where to turn, and the provider that diagnosed me did not take the time to guide me through this trying time as a patient. No patient should have to go through that alone.
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