Today I am absolutely delighted to welcome the lovely Kate Neary to guest blog for me on Dex Diva. Kate is an endo warrior too, and also has to contend with Crohn’s disease. Kate tells her story of dealing with life one day at a time, and I am grateful to her for sharing her story with us. Over to you, Kate….
After years of being in incredible pain, being bounced between doctors in my home country (US) and the one where I lived (England), it was one afternoon in a sterile medical office that changed my entire life. I was looking at images of my intestines riddled with ulcers and I was overcome with relief. Odd, I know but I was elated.
Living with the pain and discomfort for so long, it’s hard to remember when it first started but I know when it first became a real problem for me. I was 22, living in London, holding a job that was taking a toll on me. Having had been a bad day all around, I was at my wits end with being so sick, that feeling alone had turned me into a nasty bit of work. I found myself hysterically crying in a closet at work to a manager after he felt concerned enough about my obvious deterioration that he confronted me. The conversation itself was pretty forgettable. I knew in that moment that something was happening with me that I could no longer just hope would go away.
In the three years that followed, I saw countless doctors who told me I had everything from IBS to a lactose intolerance. My mother had finally given up the attempt to let me figure it all out on my own, demanding I see a gastroenterologist back in the States. She was sitting with me while I was presented the aforementioned awful images of my insides and listened while the doctor told me I had Crohn’s Disease. So why was I so excited? I finally had an answer. After years of being given a variety of excuses about my condition, I had started to convince myself that the issue was all in my head. But it wasn’t. It was right there, staring back at me and giving me a chance to make it better.
Crohn’s is an auto-immune disease in which the immune system attacks the gastrointestinal tract. When you cut your finger and it goes red around the wound while it heals, that is an inflammation your body uses in order to help. So, for example, my Crohn’s Disease causes ulcers in my intestines and in trying to be helpful, my body uses the same trick as the cut and my intestines inflame. But in this case, it actually makes it worse. Your body is fighting itself. It makes it very easy to feel let down by your own body, which is the emotional part of the physical disease. Though it may sound awful, there are times when I have wished my disease was more physically obvious or well-known so there wasn’t a constant need to explain. Auto-immune diseases are hidden and silent and very clever. My disease manifests itself mostly in the pain. Cramps and sudden stabbing pains, achiness, violent drops of iron levels and exhaustion. Managing these symptoms will be my life and I was told it was quite simple to do.
But this is where it gets tricky and difficult. It never got easier. It has gotten harder and harder to cope with. When I am having a bad day, the pain can get so intense that I have no choice but to double over or it can feel like an awful flu. I started off doing quite well and bad days were few and far between. Though as time went on, bad days were turning into bad weeks and even bad months. In the last year, I have been on steroids five times to help me cope with the pain and it is never enough. My life, as a 29 year old, has suddenly become a day-to-day hope that I will be able to get up and have the chance to behave like someone my age. There have been painful discussions with my family, my mother in particular, who wonders if there had been something she could have done differently to prevent this in me. There have been moments I have missed out on because I was pre-occupied with the pain and wasn’t paying enough attention to the world around me. There is a constant worry that the excuses for not being able to participate will become permanent.
Very recently, things got very bad for me. Suddenly the tough exterior I had mastered to get me through the pain had vanished. My ability to ‘grin and bear it’ vanished. The pain was intense and long lasting. The exhaustion was like nothing I had ever felt before, literally feeling like I couldn’t push myself up to sit in bed sometimes. I was getting physically sick and every part of my body ached. It was like having the worst flu you’ve ever had for nearly 2 months straight. I finally had to come clean to my teachers and internship manager after growing concerned about what effect this could have on my year back at graduate school. I was getting iron infusions and shots every week in hopes that it would help jumpstart a recovery. And the emotional part of it all caught up to me as well. I started to feel like I had no choice but to let the disease win, allowing me to just cry and shut down. But that was not an option. I worked to keep myself going as best I could and relying on a brave face when I knew that I might be slipping a little. For the first time in my life, I had to stop myself from constantly looking at the bigger picture and embrace that my life is going to have to be one day at a time.
There are moments in life that are serendipitous. They can be huge life events or just a little wink at exactly the right time that you need it. And I was lucky to get a wink from Jo. She had written a piece about how to cope on a daily basis with a chronic disease and it was exactly what I needed to hear at the exactly right time. There is no point in waxing lyrical about how everything is going to be ok because we don’t know that it is, but there is something to be said about being told ‘this is really shit, isn’t it? So let’s not pretend and find comfort in knowing we are all in this together’.
I would never want this to be a story of how miserable I am. In fact, I have been feeling really great! And though it may seem funny, my Crohn’s deserves a nod. It has taught me to listen to my body and to always look inward for strength. It has brought me closer to people who gave me an incredible support system. It has forced me to ask for help and not feel bad about it. It has made me a stronger and better person and though I would never wish it upon anyone, I am grateful for the lessons learned. And I’m happy to live one day at a time…it gives me the chance to really stop and see the world around me.
I may not talk about what I go through day to day with my disease but I am not afraid to let people know about what it is and the physical and emotional effects. We all have our ‘things’ that we carry around with us and if sharing, like Jo does so well, can make even one day a little bit easier for someone, the world is already a better place.