'Advice for new Patients'
When I read this prompt I thought, "That's a nice easy one". I picked up the laptop to type and my fingers didn't move. Why?
I figured this should be easy advice to give, it's not so long ago I myself was a new Crohn's patient. I should be an expert on bestowing my freshly garnered knowledge!
Well the truth seems to be I'm not. My diagnosis took a long time. Various potential causes for the pain I was suffering were touted before I finally knew what I was dealing with.
Apparently this is more common than Crohnie's would like. It would be wonderful if Crohn's was easy to diagnose, but it's not. It can be incredibly difficult and frustrating for doctors and patients alike.
When the diagnosis has been confirmed, it opens up a mixture if confusion, sadness, anxiety, and for me; relief. Relief to know what I was dealing with. A relief to know what I'd tried to prove all along, that there really was something wrong with me.
Of course that wasn't exactly something I'd been happy to confirm - I by no means wanted to feel like that, and I certainly didn't relish hearing the condition I had (have) was incurable.
I suppose the best advice I could pass on to new patients just getting to grips with Crohn's is to learn everything you can about your condition. Knowledge is one if the best weapons against the disease. Think of it as a pre-emotive strike; you can't stop what's happening to your body, but you can arm yourself with as much information as possible so you know what lies ahead. For me, that took a while to click. I really didn't want to know the in's (and more importantly) out's if my colon and beyond. I felt horrible and uncomfortable, and the last thing I wanted was to talk to others whining on about what terrors lay ahead. I can't say I was wrong to feel that way, because that was my initial reaction, and I can't apologise for my feelings. However, knowing what I know now, I realise that sharing my story and hearing from other sufferers, CAN be a positive thing.
Growing my knowledge on Crohn's has been a great help. It's awesome to get the insight from patients going through it and not just doctors.
Another important nugget of advice would be to be patient. A patient Patient if you will. Don't pressure yourself into recovery mode, or try to get back to the way you were Pre-disease. Stress and Crohn's make for unfriendly bedfellows so this is the last thing you want. Believe me.
Don't feel bad if you have difficulty in adjusting to your new body either, it will take time, so please don't beat yourself up if you feel you should've made more progress. What you are going though IS a big deal.
Finally, don't be afraid to let others in. You may feel alone in this bit you are not. Your lived ones may be as confused and frightened as you are, so don't shut them out. Let them help you navigate your way through this. Again, this is easier said than done, and the urge might be to push people away. But no one said this was going to be easy! Being one myself, I know that us Crohnies's are a tough bunch. We have to be to put it the hours fighting this disease on a daily basis. You are too. And you don't have to fight alone. X
This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days