Having chronic illness and autoimmune disease requires an organized mindset. There are so many things you must manage and communicate; it can often feel very overwhelming. I find that some of the symptoms of primary biliary cholangitis (PBC), such as brain fog, tend to make staying organized even more challenging. I’d like to share with you the ways I manage PBC and how I try to stay on top of my health and treatment.
Keeping on top of your mind, body, testing, medications, doctors and symptoms are the keys to managing it all. It can feel very heavy, but I find the more you understand and stay organized the better you will feel both mentally and physically. Having PBC can make you feel like you do not have much control, and these are some ways you can gain some of that control back.
Mind
It is so important to take care of your mental health, especially when you are managing health problems. I try to find time every day to rest, reset and recharge. It’s important to try to manage stress as best you can, because stress can cause flare-ups and worsen symptoms.
I have found support groups online and via social media that have offered so much support and understanding. As a whole I find support groups tend to have more information available to us than our doctors, due to the number of people and their experiences. Who better understands you than someone who’s going through the same thing and also has specialists monitoring their care?
I also think it’s important to have real life people supporting you. It’s nice to have those who love you understand how you struggle with symptoms and how it can affect you day-to-day. For me, it is imperative to have some support and rest to maintain my mental health
Body
Having PBC means being aware of everything we expose our bodies to. I am by no means perfect with my diet, but I am aware and educated. You don’t have to completely cut out anything — except for maybe alcohol.
Many people with PBC still continue to consume alcohol in very low moderation. I think the key to that is speaking with your doctor on your stage and your intentions. Most people with PBC choose to refrain indefinitely.
Personally, I only have a drink or two a year, but I indulge in sweet treats and fried foods more often than that, so who’s to say what’s better or worse? Most of our doctors will agree that all things can be tolerated in moderation. Some people with PBC go so far to avoid hair dyes, nail polish and other things they feel are being absorbed and processed in their liver.
I think another part of taking care of our bodies is getting movement and exercise. It also plays into our mental health to get those endorphins moving. I thoroughly enjoy the sunshine, and I feel like that is healing for me.
Testing
When you have PBC you will be facing different kinds of medical testing throughout your diagnosis. I have multiple autoimmune conditions and other chronic illness, so I have a more complex medical history that requires distinct types of monitoring more frequently than someone that may only have PBC. However, having PBC still requires yearly labs at minimum — and many doctors request every three to six months.
I’m currently awaiting another MRI, and just last year I had my second liver biopsy. Many of my other doctors track my liver labs more frequently, sometimes as often as every two weeks, because of medications prescribed for my other conditions. I have had medications and treatments for other diseases affect my liver in very severe ways, so it’s important to always be aware of risks and advocate for yourself.
Medications
This leads me into medications. There is no cure for PBC, but a huge number of patients are able to live a long, healthy life with proper treatment. Currently, patients with PBC are often started on the mainline medication Ursodiol. Science has come a long way since I was diagnosed, and there are new medications currently out and more being studied. Some doctors decide on adding to this regimen or even stopping Ursodiol due to how a patient responds or progresses. There are many medications that can be added to manage symptoms. We are all unique!
Taking supplements is very controversial: as a patient with PBC, it’s highly recommended to speak to your specific doctor regarding your case. There are lots of liver cleanses and liver healing supplements available these days, but none of this is regulated well through the FDA and they are not always safe. Proceed with high caution.
Doctors
It’s very important to have a doctor that you feel listens and is knowledgeable about PBC. I found a specialist in a nearby city because I get better treatment there than in my small town.
It’s important to be able to communicate with your doctor in between visits. I have found using the digital app MyChart helps keep me in touch with all my specialists, in one space. I am also able to monitor all my labs and testing, book and cancel appointments, and share my information as needed. It really helps keeps me organized.
Symptoms
For me, the biggest problem with having PBC is the symptoms I struggle with day-to-day. I suffer from itching, fatigue, joint pain and liver area pain. And the dreaded brain fog. Sometimes, I use MyChart to touch base with the doctors and let them know how I am feeling. Sometimes, I try harder at managing my diet and mental health. I add more water and try to get better sleep. I’ve even added supplements that I thought would be beneficial (with my doctors’ approval). I also use my support groups when the struggle is extra heavy.
Every day is different when you struggle with autoimmune disease, but when you feel in control and can manage the small things, you tend to feel stronger and healthier.
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