Coping | IBD
Being diagnosed with a chronic condition of any kind is often a long, exhausting process. My own diagnosis journey involved three specialists, over four years of debilitating pain, and five surgeries. What made all of this unnecessarily harder was the reality that while struggling with the physical and mental pain of chronic illness, I was also immediately required to be my own advocate and fight for the care I needed. I’m not a very assertive person by nature and in the beginning, I found it really difficult to ask for things or to argue when I thought the way I was being treated or medicated wasn’t quite right. However, in a medical setting and particularly as a woman, it is so important to feel that you are in control of your own treatment and the decisions that are made about you and your body.
I remember falling to the floor of the bathroom at the hospital. I was just out of surgery, gauze taped over my wounds, and a loaded IV pole in tow. Stuck on the ground, I felt so drained of energy. I had absolutely no drive to get up and face it all again. In fact, I was so tired that I had not even thought to ask the surgeon what was going to happen while I was under anesthetic this time. I just assumed that it was going to be the same as the one I had a month earlier. I knew I could handle that because I had already done it. I think that’s why it hit so much harder when I realised that I had something new to deal with. The surgeon placed seton drains under my skin without my permission or knowledge. While I can understand that the surgeon did what they thought was best for me at the time, being faced with something I wasn’t ready for and wasn’t expecting definitely made the healing journey more difficult than it needed to be. At that moment, I realised that something needed to change. A lot of IBD procedures are invasive, intimate, and confronting. I decided there and then that I never wanted to be in the position again where I felt unprepared or unnecessarily scared by an upcoming hospital stay. This is the first step to being your own best advocate: ask questions.
I know it is probably the last thing you think about when you are already so sick, but try to learn as much as you can about what you are dealing with: ask your specialist about your treatment plan, research your medication options, check with the surgical team before they do anything to your body that you do not fully understand. It is critical to have an active voice in your healthcare. As much as we are taught to trust people in positions of authority, a university lecture on a condition is never going to teach you as much as living with it all the time. I know it is hard to believe, but you really know your body better than anyone else. Trust yourself when you feel that something has changed or is not quite right. Also, do not be afraid to say no to something or to ask for more information before committing to a course of action. I tried quite a few medications before I found one that really worked for me. During that process, some of the medications made me feel worse or had nasty side effects that were interfering with work or my studies. I was well within my rights to ask to try something else. You do not have to put up with a treatment that is not working for you. Keep pushing to get a better quality of life for yourself.
Throughout every appointment and surgery I had, my mum has been absolutely amazing. She showered and fed me when the nurses did not have time. She would go and get a heat pack for me when I was in pain, and she asked the questions that I didn’t have the energy to think of at the moment. My family and friends advocated for me and took care of me when I couldn’t do it myself.
Having support is fantastic, and it can’t be underestimated how much it helps. Nevertheless, there will be times when you have to face things on your own, and it is important to feel confident enough to be your own advocate in those situations. Arm yourself with knowledge, put your big girl boots on and march into that appointment with your head held high. Remember that you know yourself and your experience of your illness better than anyone else does, and you now have the tools to say no if you need to or to get clarification on anything you are not sure about. You may not be able to control all the curveballs that chronic illness will throw at you, but you can control how much you are directly involved in fighting back. Be your own advocate at every opportunity, lean on family and friends where you can, and fight for the best treatment for you. In doing so, you will inspire other women in the same position to speak up and advocate for themselves too. You can do it!
Alyssa is a writer, puzzle enthusiast and volunteering wizard from Perth, Western Australia. She was diagnosed with Crohn’s Disease in 2016 and ever since has wanted to raise awareness for IBD and help to create support networks for the warriors who live with it.
She has a degree in Archaeology and Italian, spends her weekends doing boxing and muay thai, and lives with her boyfriend Nick and a crotchety old rescue cat called Harley.