Chronic Illness and Family.
Being sick definitely changed the dynamic of our family.
Diagnosis Day landed a brick in our household that came from nowhere. We didn’t know how to act, we didn’t know how to communicate and we didn’t know how to respond to what I was being told – You have an incurable illness that will be lifelong and difficult at times.
I remember just being glad it wasn’t cancer. I also remember thinking that I would beat this and it would be over soon and thing would go back to normal.
We all know, ‘going back to normal‘ wasn’t something that can happen with an incurable illness. I was naive and trying to remain ever positive in the face of all the shit Crohn’s disease chucked at me those first few weeks and months.
The result of C Diff diagnosis and being in isolation for three weeks. The falling asleep in clinic as I was still really struggling to control my bowels. The puffy moon face from high dose steroids. The sickness from Azathoprine attacking my liver. The ambulance my dad had to call one Tuesday morning in October. The admissions from clinics; that happened twice. The despair I could feel in the room every time I returned from being sick in the downstairs loo. The confusion on my parents face when I couldn’t finish a meal.
But I never once had an admission in that first year without one or both of my parents there with me. I never had an appointment without them, for clinic or a procedure without them. My mom came with me when my Humira induction began. She got trained by my IBD nurse too, to help me when I got too scared to inject myself. They always encouraged me to take my medication, made sure my diet was safe and I felt looked after.
There has always been encouragement.
Even when I advocated for a second opinion and a surgical consult too, when my Crohn’s became resistant to medication back in 2015 into 2016.
It must be a scary and unknown time when your child wants to endure surgery to fix a problem you can’t really see. And it must be a weirdly proud moment when your child wakes up from said surgery and is happy. There was a good six months of build up for my first surgery – as I got my drug levels tested, I had procedures to locate the source of my failure and what a plan of action was – so it wasn’t a huge unplanned surprise but it was not easy. We did blindly think that one surgery would be enough, but it wasn’t and I spent a long summer in and out of hospital, wasting away without answers to why I was still so sick after a resection.
Those months, three years ago to the day, were truly a struggle; I battled on despite everything my body and illness threw at me. I suffered every day with pain and sickness, not eating and having very little energy to do much; I needed caring for. So after work, my parents would help me out – if not making sure I was feeling better at home, they would be visiting at the hospital to keep my spirits up.
Going into the build up for stoma surgery was where things really deepened. I’ve always been abit stand off-ish about being really emotional around my family, we’ve never been really touchy feely and affectionate to each other. But they witnesses me going through more testing, enduring more shite from my Crohn’s before my surgery was even scheduled. To come out of that with a positive attitude towards being colon-less for the rest of my life was something I never expected anyone to feel proud about, but they were.
Don’t get me wrong, there have been fights and arguments about ‘doing what is best’ when all I’ve wanted to do is be ‘normal’ again and throw caution to the wind. At times, those moments have really back fired but I was never really belittled or punished for doing too much or burning myself out. I think they realised that my body was punishing me enough for overdoing it, so they were never going to really make an impact.
It is tough these days when I am in a different part of the country to them and my medical care is something I manage alone now. There were numerous times when my parents would have to reschedule my appointments because I was too sick to make it in or I was just too tired to do the leg work of rebooking in. Even living with my partner, I make all my own medical decisions by myself but I wouldn’t have it any other way; I am my own advocate.
How does having IBD affect my relationship with my family? Specifically my parents?
- We talk honestly and openly about our health, something we never did before I was diagnosed.
- Humour around ‘shite’ is the talk of our house.
- I might not have a high power career or own my own house, but my advocacy work makes the proud.
- They share my experiences with others – when asked – and I know that I am living with purpose beyond myself.
- There is a common understanding that there is more to life than money; it should be about happiness.
- I actually love having check in chats with them, something I used to dread as a teenager.