Me and Ste have now been together almost ten months. We met through an online support group for people with IBD, becoming friends before meeting up and starting a relationship.
My ex-husband was not very supportive when it came to my health problems. It is always tricky when you meet someone new with a view to dating. You wonder how soon you should broach the subject of your stoma and when you should explain that you had a hip replacement aged just 23.
As me and Ste had met on a support group and been talking as friends for a while, we knew of each other’s health problems so didn’t need to worry about this conversation! Ste had previously had a Facebook post go viral in which he talked about how people judge by appearance. He has been extremely poorly over the past few years but to look at him, you wouldn’t necessarily know it and many are quick to judge when they see you using a disabled toilet for example. I had shared this post months before we started talking so was well aware of him and everything he has gone through, which does seem a bit strange now!
Being with someone who also has chronic illnesses can be both a blessing and a curse. Here is a list of 8 things that you will understand if you also have a partner with a chronic illness.
1 – One of the hardest things is knowing the pain they are feeling as you have been in it before too. You know, like no one can do for you, that you can not physically do much at all to take that pain away for them. Seeing your partner in pain is one of the worst things ever though. At the same time, knowing your partner understands your pain and doesn’t just see it as a ‘bit of tummy ache’ is comforting. Your partner just understanding that can mean everything.
2 – You will spend ALOT of time in hospitals! Appointments, collecting medication, inpatient or visitor. For one person with a chronic disease (or three) you will be around them enough but when there is two of you, you sometimes feel like you live there!
3 – Your good and bad days won’t always line up. You soon learn to take advantage of the times you are both feeling a bit brighter though, and you learn to appreciate the little things.
4 – You won’t find someone who understands your illness better. People sometimes don’t understand the importance of support groups, but finding people with the same illness as you can be just brilliant. You have similar experiences, are on the same medications, and you don’t need to explain things all the time, they just get it. I have many lovely friends and family members who are very caring and helpful but having someone who just ‘knows’ without you having to explain things is invaluable at times.
5 – If you happen to forget your emergency kit you know the other one will have their stuff with them if you have a leak when out (usually me – isn’t the female always more prepared?!). Luckily we use many of the same products, including bags, so when staying at each other’s houses we don’t need to worry about taking loads of stuff, as we can just borrow the other person’s if we are running short.
6 – You don’t have to explain every little thing that happens in your appointment. They understand the medical terminology, complications, what can happen etc. Sometimes after a long appointment, especially when it wasn’t a particularly positive one, the last thing you want to have to do is explain every little detail of what was said. It is also useful to have them with you as they ask questions you might forget. They are also able to offer sound advice when you are given options for treatment for example, as they may have tried it or know a bit more about it than someone who doesn’t have the same illness.
7 – You both understand the need for early nights and naps. You never feel guilty for feeling and admitting your fatigue. Me and Ste are often in bed by half 8/9pm and enjoy nothing more than a snuggle and a good boxset or movie! Netflix and Now TV are definitely worth the money in this house!
8 – Nobody is more understanding when you have a leak in bed. I was absolutely mortified a couple of months into our relationship when I had a leak in Ste’s bed. He couldn’t have been more amazing though. He got me the stuff I needed to clean up and change my bag, stripped the bed and remade it and then got me a cup of tea once I was back in bed and gave me a huge cuddle. I couldn’t have been more grateful for how he handled it. As he has a stoma too and has experienced leaks himself, he knows exactly how it feels and that just made the whole thing so much less awful.
At the end of the day, we are not our illnesses. I love Ste for the caring, handsome, strong, funny, amazing Dad, brilliant Step-Dad and gentleman that he is. We have fun, dream about our future, argue, cuddle, worry, kiss and do the mundane things just like any other couple. We both face tough times ahead with our illnesses, Ste is facing more surgery at some point in the future and my flare still isn’t under control. It is worrying and scary but there is nobody I would want to spend the rest of my life with and we will face it all together, forever