Having a partner with lifelong illnesses and learning to cope.
Bit of background for you. Me and my partner Charlie met when we were at school and began going out at 15 years old. We grew up together and shared the same memories which is so special. We now have our son who is 8 months old, who despite all odds blessed us coming into this world.
I was living at Charlies parents with him while working as a business administrator for the NHS saving up to move out. Charlie began looking gaunt and tired all the time, but he’s such a closed book I assumed he was just tired from work. I noticed he kept spending an awful lot of time in the toilet daily and seemed exhausted when he came out. One night after dinner he told me ‘Hannah don’t be alarmed but every time I go to the toilet I’m bleeding a lot.’ I knew he was ill and I phoned 111 who told me to take him straight to A&E. I thought maybe it was a stomach bug. What I thought would be a couple of hours turned into weeks. Charlie was admitted and needed an IV drip as he was dehydrated. They done multiple scans, MRI’s, colonoscopy’s, blood tests and examinations on him. He began turning yellow while in hospital which scared me. Eventually consultants sat down with us and explained what was going on. Charlie was diagnosed with a rare liver disease called PSC (Primary sclerosing Cholangitis) and also autoimmune hepatitis of the liver. They said his liver was very scarred. As If that wasn’t enough to take in we were told he had ulcerative colitis (Bowel disease) and his bowel was extremely inflamed. They were going to take his bowel out while he was in hospital but because its such a big operation decided to try get the inflammation down with steroids, injections and medication. Once Charlie was discharged he was still extremely ill and ended up losing his job. I was unable to continue working when he needed me to help him. He was seen multiple times a week and needed help administering his injections. He then developed osteoporosis (bone disease) from the vast amount of medication. He was brittle, frail and relied on a walking stick to get him everywhere. He was only 19 years old.
This was a lot for me to take in, but not once did it ever cross my mind that it would be too much for me. After many hospital appointments and blood tests frequently we were told his illnesses would never get better and in the future a liver transplant will be needed, along with a bowel removal in the future when it gets too bad. We were told his life expectancy will be shortened and having children wouldn’t happen naturally due to all the medications he was on.
We decided that we wanted to have children young, because every day we learnt to embrace because we didn’t know what the future would hold. I developed PCOS (Polycystic ovary syndrome) so along with Charlie’s problems it was extremely hard to conceive. We got there in the end 2 years later and welcomed our son into the world. Our son gives Charlie a purpose in life to fulfil his life. He’s an amazing dad.