As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right? Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
1. Don’t scare us. One of the worst moments I had whilst in hospital was with my IBD nurse, the second occasion I had met her, to which we spoke about surgical options. I was and am no way near any sort of surgical intervention, but she thought it was a perfect opportunity to “scare” me into making me take my medications – those first level, low dose Pred and Asacal means of controlling my then chronic inflammation – which it did spectacularly; I’m still quite unsure and apprehensive about the idea of someone cutting my belly open to fix me. But in hindsight, she was too eager to ‘scaremonger’ me into what could or would possibly happen in the future, way off in the future.
2. Don’t sugar-coat it. At other times, they – the GIs and nurses – have been hesitating to tell me the truth. When I got C Diff the second time around, they took days to confirm whether or not it was induced by the Aza or not. In the end, they concluded I was ‘allergic’ to Azathioprine and it was discontinued as a course of treatment. The same happens on my bloods; they won’t explain what is what or what means what. It is difficult at times to have an honest and open relationship with my IBD nurse because she wants or wanted to protect me. Why?
3. Be blunt. Sometimes, being blunt is the best policy. Giving someone false hope, only to have it whipped away from underneath them is awful. It is difficult to be blunt, because a lot of what we go through is sensitive and personal, but I would rather be told straight what is going on than protected because I am still a “newbie” to all this Crohn’s malarkey.
4. Keep at it. Please, don’t give up on us. We are usually good when it comes to asking and receiving help. For the most part, we like to help ourselves instead of ask for it. When we do though, please be courtesy. Because it has taken a lot to ask for help. It always will do. Because of the nature of IBD, it is not something you particular want help with but on occasion we need someone to just pick us up when it gets too much. Please don’t take it too personally when we resist help or your advice, because fatigue and mood swings happen to me a lot more than I care to mention or reveal. That being said, we have moments when words hurt our hearts because we can not understand or comprehend how some people can be so ignorant of our plight. Don’t get me wrong, we hide it well, but because we live with it every day, we think everyone else can see it. That isn’t the case. So please, go easy on us, to begin with, it’s such a steep, constant learning curve.
5. Don’t keep comparing [yourself] to “healthy people”. That will do you no good. You won’t ever be like those people. You will always struggle with your tiredness and energy levels. You will always be fighting an invisible battle. And in those short periods (or long ones if you are lucky) of good health, the “healthy people” will sarcastically mock you for your illness because they can no long see the havoc it has reeked on you. So, yes, you are different now. But it is a good different. It is a good chance and it sometimes takes a while to see it, and re-realise it once more. Take your time. The hate and bitterness is, at times, a good tool for you see where you have been and how strong you were to endure that.
NB: It is difficult to write this post without getting personal. I can not write without going into details about aspects of my care, thus far. For the most part, its been great. But because I will always deal with my Cronh’s on my own – not because I don’t share, but because it is invisible – this post is a critique of what I will be looking out for with new caregivers. For my family and boyfriend, it has been a steep and long learning curve, because it is all so new to all of us. I am 18 months into my diagnosis of Crohn’s Disease and everything that happens is always something new. It doesn’t even hark back to the things that have happened to me, no two events are similar in more than a few aspects. So, this post is more about what I hope I can now say I know about being my own caregiver and what I will be sure about next time I have to relinquish my role to someone else.