One Woman’s Honest Message to Doctors | Katherine’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 Katherine wants us to know about living with chronic illness…
One Woman’s Honest Message to Doctors | Katherine’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “I first developed POTS symptoms in 2015, but I wasn’t formally diagnosed until late 2016. I started chronic illness blogging in 2017 when I had a few articles published on the Mighty. I created my own blog after my favourite doctor suggested that it would help me to keep my mind active. POTS has an average diagnosis timescale of 5/6 years. The 18 months that I had to wait for my diagnosis were the worst of my life. I hope by raising awareness of POTS through my blog, I can help someone get a diagnosis sooner and prevent them from suffering as I did in the early stages of my illness.”
Q: What’s the most challenging aspect of life with a chronic illness?
A: “The most challenging aspect of my life with chronic illness is dealing with the perceptions of other people, including medical professionals. Most people don’t seem to understand how difficult my illness makes my life. If I must cancel plans, it’s because I must put my health first. If I have to quit my job, it’s because the negative effects of the work outweigh the positives. With regards to medical professionals,
I didn’t choose to have a complex illness, it’s just how I am. It’s not my fault that it makes your job harder. I’m the one who has to live with this illness.“
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “The positive thing that has come out of my illness is that I got the opportunity to start my life over again. I now have a job that I love and a healthy work/life/illness balance. Previously, I was working too hard and not taking any time for myself. The life-threatening complications I endured from my illness a few years ago forced me to take stock of my life and consider what is important to me. I now work part-time and spend a few hours a day managing my illness.”
Q: What are some things you wish people understood better about your illness?
A: “I wish that people understood how my illness affects every aspect of my life and every decision that I make every day. The severity of my symptoms fluctuates daily. I won’t always be well enough to attend events and if I do, I will probably have to leave early. I can’t always follow through with long term plans because I don’t know how I’ll be feeling in a few months’ time. I may be better, but I could be worse. I also find the uncertainty that come with my illness to be frustrating, but that is how I have to live now.”
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “Pacing is a popular technique for those with chronic illness. I have used it to build up my stamina over time and to plan my daily tasks. In the future, I hope to be able to live like a ‘normal’ person again and go out on spontaneous trips, but for now, I am content with leaving the house three times a week. Some people don’t like pacing, but it can be a game changer. Give it some time and you will see the benefit.
With regards to my POTS symptoms, starting the day with an electrolyte drink like Nuuns or High 5 really helps take the edge off the dizzy spells. As well as drinking 2-3 liters of water every day. I used to drink 5-6 liters because when you have POTS you’re told to drink a lot of fluids. However, this was an unsuitable technique for me that caused me kidney pain so severe that my doctor couldn’t even examine me without me squealing in pain. The moral of this story is that when you have POTS, salt is important. Don’t flush out your system with plain water.“
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “I have not yet seen a therapist but have just booked an appointment to see one due to the psychological effects of having a chronic illness. I believe that everyone should be given the opportunity to see a therapist when they are diagnosed with an illness as the psychological effects of having a long-term or incurable illness can be very severe.”
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: “A new diagnosis is the first step towards a better life for yourself. Educate yourself about your illness and all the possible treatment options so that you can make an informed decision when you are discussing them with your doctor. If you have a complex illness, then your doctor may not be aware of all the treatment options available. Make sure that you know what they are so that you can point them in the right direction.“
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