Why it’s Important to Seek Help Early | Jenny’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how our next guest Jenny wants us to know about seeking out help for chronic illness…
Why it’s Important to Seek Help Early | Jenny’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “I have Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. FAP is a hereditary gene mutation that causes 100s to 1000s of precancerous polyps to develop in the colon. In addition to colon cancer there is elevated risk of other cancers and extracolonic manifestations. I was diagnosed at age 8 and had my colon removed at 9 causing me to develop Short Bowel Syndrome that causes malnutrition due to a fast GI transit time and limited absorption of nutrients.“
Q: What’s the most challenging aspect of life with a chronic illness?
A: “It is difficult to manage chronic illness with its daily symptoms and constant medical monitoring with full time employment and activities. Maintain employment in order to support myself is the most important thing for my well-being but it can be challenging to find a balance between the necessity of work and my health.”
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “I was asked to start a blog about FAP which led to the creation of a shop to raise research funds for FAP. Being able to help participate in raising awareness and advance research has been fulfilling.”
Q: What are some things you wish people understood better about your illness?
A: “Most of us with FAP look physically well but FAP effects the entire body – it is not just about the colon. And because of these wide ranging effects, our quality of life isn’t as it appears and it requires dedicated lifelong monitoring and treatment to help combat all the negative effects and risks of this disease.“
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “Limiting my food intake helps to reduce my chronic pain and staying on top of my medications helps me tolerate my pain and nausea. I’ve also found it be important to balance when I take medication for my Short Bowel Syndrome to help reduce the risk of intestinal blockages while maintaining an active lifestyle.“
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “Therapy helped me learn to cope with my PTSD and depression from my medical trauma, it changed everything for me. I still go through bouts of depression periodically but I have the tools to help myself and the knowledge that medication management and counseling is always there for me if needed.”
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “Don’t procrastinate – see a doctor and get evaluated as soon as possible. It only took a year for my precancerous polyps to start turning cancerous. The sooner you seek help the sooner a plan can be made to help treat and manage the illness and symptoms. Emotional support is also key to adjust and cope with chronic illness. It isn’t easy but now with technology and social media, we are no longer alone in our struggles.“
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