For this week’s blog we talk to Megan Kuleas about her pain story.
Megan Kuleas is 31 years old and is a self-described ‘proud Canberran’. Working full-time in the public service, Megan is undertaking postgraduate study while also finding time to volunteer with local charities.
Megan’s pain story began when she was young, being diagnosed with Poly-Cystic Ovarian Syndrome and then later diagnosed with endometriosis when she was 18.
“I have been lucky in that for the majority of my young adult life I suffered few to no symptoms. I was able to excel in my career, studies, extra-curricular activities and hobbies. I was used to working upwards of 50-hour weeks whilst studying my undergraduate degree full time via distance and holding a position on the board of directors for a national charity. I loved working out and maintained a very busy social life.”
However, in 2017 Megan became very unwell and her once busy lifestyle came to a halt.
“I started experiencing the most unbearable pain, and it was like my life began to spiral out of control. My Canberra-based specialist had advised my endometriosis had returned and gotten worse and I needed a more invasive operation. He was no longer able to help me and referred me to Sydney for my fourth surgery.”
Megan spent a lot of time in the hospital emergency department where she would be admitted for a week at a time and placed on a ketamine or fentanyl infusion. She was so unwell she exhausted 11 years of personal leave in just 18 months.
Megan was happy with her Sydney specialist, and felt she was in good hands. However, unfortunately the fourth surgery did not work and Megan has since been diagnosed with Adenomyosis and Poly-Cystic Ovarian Syndrome again.
“I am in pain every day, but on some days the pain is not as severe and debilitating as others – these days are my good days. I am required to take a number of medications which impact me differently each day and I am unable to predict how I will feel as a result. This does make me self-conscious and I am often choosing not to take medication if I have an important meeting or engagement on.”
Megan says her pain specialist often reminds her about pacing and setting realistic expectations.
“One of the hardest things I have had to do is to accept that I am not able to do what I did before I got sick. I am not able to work lengthy days or study more than one subject at a time for my Masters or do a variety of extra-curricular activities anymore. I frequently spend weekends in bed resting and I often find myself cancelling on friends or appointments as I am in too much pain or too fatigued.”
“On a daily basis, I struggle with guilt as well, the guilt of not living up to my own expectations or to the perceived expectations of others.”
While Megan has since also been diagnosed with a heart condition, she remains confident that she will not always be in pain and is optimistic about the future.
“I am continually reviewing my health management plan and ensuring I am doing everything I can to help myself. I have been successful in minimising the number of health professionals I need to see, choosing to only see a select few. I have also been able to cut down on the amount of medication I take in conjunction with my pain specialist which has been challenging at times but has also been successful.”
“I have the most amazing family and friends who support me every day without fail. I honestly don’t know what condition I would be in physically or mentally if I did not have them by my side.”
Megan is aware of the value and impact of sharing her stories with others, as so many people live with chronic pain.
“Chronic pain does not discriminate. It can affect people of any age, gender, or cultural background. Society does not always accept or understand this. It is a commonly-held belief that people with chronic conditions should look sick, that they are usually old or physically impaired, or that they are unable to work or function. Yes, this can be the case, but it is not always.”
“Those who have chronic pain have good days where they do not experience any symptoms and they are able to contribute successfully to their community. For some people living with pain, they just do not look sick at all.”
“I hope that by sharing my story, I can encourage others to share their stories too. By sharing our experiences, we can increase awareness and understanding of chronic pain and help to break down people’s assumptions of what chronic pain is. It is important to remember that your chronic pain does not define you, it is only a small part of who you are.”