Everyone’s chronic illness journey is different. Each person touched with the “spoonie” brush has experienced different diagnoses, time periods of illness, symptoms, medications, emotions, healthcare plans, doctors, surgeries and prognoses. One thing that each of us may likely have in common though is the experience of some kind of evolution – a growing or changing of identity as who we are as individuals is impacted forever. I stress though that I am not referring to a change from a healthy person to a sick person, as who we truly are is certainly not defined by a diagnostic label. The evolution I refer to is the growth we experience within ourselves as the hardships we endure begin to alter our perceptions of our lives. Whilst our physical selves may seem to run at a loss as we experience pain, weakness, fatigue, surgery or medication side effects on a daily basis, I truly believe that who we are on the inside is largely enhanced and improved by the struggle.
My chronic illness journey began about 12 years ago when, at 17 years old, I began to experience some stomach issues that were identified as irritable bowel syndrome (IBS). These symptoms would come and go, “flaring” on occasion. Experiencing recurrent bouts of anxiety meant that many of my symptoms were often linked to my stress levels or even to hyperawareness of my own body. Over the years, I continued to lose small amounts of weight. Following my father’s death from cancer in early 2015, the symptoms began to worsen but were again put down to the stress of his passing. It was lucky that an unrelated gynecological ultrasound detected several swollen loops of small bowel in my lower abdomen that warranted further investigation. One colonoscopy and CT scan later, I was finally diagnosed with Crohn’s disease. After managing my new-found lactose intolerance, intestinal stricture and small-bowel inflammation with diet, short-term Prednisone and long-term Azathioprine therapy, the gynecological issues I had had previously began to exasperate. It was time for the laparoscopy that had long been on the cards. Just two months ago, it was confirmed that I also have endometriosis. Extensive adhesions were found throughout my abdomen (caused either by the Crohn’s, endo or both) and what could be treated was removed during a three-hour surgery. And that brings us to now – and so the journey continues!
When I reflect on my story so far, I notice how far I have actually come, not only in terms of my physical health, but mostly in terms of my mental and emotional well-being. My experiences are certainly none that I would wish upon anybody; however, I am quickly learning the importance of not resenting or begrudging them. One of my favorite quotes is: “We cannot change the cards we are dealt, just how we play the hand.” Acceptance of our journey as “spoonies” is what allows us to open ourselves up to learn from it and see a positive side to everything we go through (even if not straight away). The lessons I have learned already are countless, but for the sake of this blog, I have come up with a list of 10 that I feel have changed me the most and have helped to put me on a path to becoming a better version of myself.
1. Always be grateful.
No matter how sick you may feel at any given time, appreciate that you are alive and that there is so much in your life to be thankful for. Take time to practice gratitude.
2. Never underestimate your strength.
Sometimes we are unaware of how strong we really are until we are truly tested. Our bravery and persistence cannot fully be realized until we experience fear and challenges. When you learn that you can survive more than you ever thought you could, it’s a pretty amazing feeling.
3. Grow your resilience.
Each hurdle thrown your way may be difficult for a time, but each boundary is growing your ability to recover. You have survived everything you’ve been through to date. Remember this (as well as the strategies that have worked for you) for next time. You will need them again.
4. Your energy and “healthy times” are precious.
When you only have so many “spoons” for each day, savor them and use them wisely. You can never be sure when your next flare-up of symptoms will be, so make the most of the time that you have feeling well. Know the limits of your spoonie body. Listen to it when it tells you to stop.
5. It’s OK to be selfish sometimes.
Take time for yourself without guilt or reservation. If you need a rest, take it. If you want to pamper yourself, do it. Cancel some plans. Learn to say no. You might resent it at first, but you will thank yourself later.
6. There’s something to be learned in every hardship.
In every struggle, find the hidden message. There is always something positive to be gained, no matter how small. Learn. Grow.
7. Take care of your body.
Love, nourish and care for your body for what it is. Never resent it or wish it were something more. It is what it is and it shouldn’t be “blamed” for its shortcomings. Bring your mind and body back together as one. Do some yoga. Love yourself.
8. Educating yourself is important.
Read extensively and critically. Research everything. Know your disease, medication and body inside out. Alleviate some anxiety by being more informed. If something doesn’t seem right, ask questions. Find as many ways to help yourself as possible.
9. Cherish those who support you.
Notice who checks in with you when you’re unwell. Identify who you can talk to about your health and who seems to feel uncomfortable discussing it. It may be that that aspect of your life is just too much for some people to deal with. Accept that, and surround yourself with the right support when you need it. Join a support group. Follow Instagram pages that inspire you. Read a blog. You aren’t alone. There are people who understand.
10. Be positive – always.
There is always beauty in the battle. Perhaps we have been given our journeys to teach us more about who we are and to change our perspectives. Maybe being unwell has made us more grateful for the days we feel good, which many may take for granted. Perhaps we have been enlightened by the understanding that good health (and our lives) are fleeting, and now know that each day truly is a blessing.
As I said from the outset, everyone’s chronic illness journey is different. The lessons I have learned so far may be very different from yours. Whatever our experiences may be, I hope we can all learn something, grow ourselves and find the positives within the journey. Whilst we will always experience sad and negative feelings along the way, it is important that we acknowledge our frustrations but be willing to let them go. It is by letting go of the bad that we make room for something better and, ultimately, someone better. If the “beauty in the battle” refers to the silver linings that emerge from our struggles, know that the greatest “beauty” to come out of your journey will likely be you.