My diagnosis was 11 years ago today. I was 11 years old when I was diagnosed with Crohn’s disease. So, I have officially lived half of my life with IBD. When I was first diagnosed it was a lot to process, a lot to take in, and it was extremely difficult for everyone, including my parents.
So, today I decided to share with you the top 5 things I wish I knew when I was first diagnosed 11 years ago. If you stumble across this post because you are newly diagnosed, I just want to let you know that YOU ARE NOT ALONE. You will get through all of this, and you will thrive again.
1. Education is Important
When you are first diagnosed with a condition there is A LOT to process. What medication do I take? Do I follow a holistic route? How will this effect my future? What are my limitations? And the list goes on.
So, it is important that you take the time to properly do your research and take information only from TRUSTED sources. Be careful of going down a google black hole. It is important to take information from three trusted sources: your doctors, books, and select online sources.
Your doctors should be your main line of information because they are the experts. If you need more info, ask for recommendations from them. Odds are that they will have a ton of resources to share with you. Why I say books as second, is because authors of books have done a TON of research. They are usually very well versed in their field and have done years of research in these topics. Overall, be careful of what/who you take advice from, and take everything with a grain of salt.
2. Health Care Is a Team
It can be easy to find your specialist doctor and stop there. But, in my experience, I found that you receive better care when you surround yourself with a team. That is why I have my specialist, a naturopathic doctor, a chiropractor, and a nurse specialist as part of my team.
Don’t be afraid to request to see other specialists if you are experiencing symptoms outside of your doctors range of knowledge. After all, team work makes the dream work.
3. It Effects Others Too
When you are first diagnosed it is easy to get stuck in a self pity party, and this is totally fine. But, it is important to realize that people around you, especially the people you spend the most time with, will have to process all of this information too. So be patient with yourself, and be patient with others around you. It is a learning experience for everyone involved, so make sure to keep that in mind.
4. The Mental Part is Just As Bad As The Physical
For the first 7 or so years of my Crohn’s diagnosis I was never really effected by the mental aspect of my condition. This may have been because I was so young, so I didn’t have a lot of stresses around me, it may have been because my condition was fairly stable, or it may have been a combination of many things.
Regardless, this all changed when I started to experience terrible pain in 2016 towards the end of my first year of university. This pain continued to persist and so my mental health continued to decline. I decided after struggling with depression for a while, to go on medication and this really seemed to help.
This just goes to show that your mental condition will fluctuate with your physical health and condition. So, it is important to keep this in mind as you go through ebbs and flows with your health.
5. Everyone’s Condition is Different
When first being diagnosed, we reached out to many people around us with IBD to try to gain some insight on their conditions. However, what we quickly realized is that everyone’s conditions were VERY DIFFERENT. People had different symptoms, different parts of the GI tract effected, people were on different treatments, diets, and more.
So, this shows that it is important to take all of the advice you receive with a grain of salt. It is good to try new treatments, but you can’t expect everything to work the same as your friend. One person may swear by a gluten free diet, while someone else may swear by acupuncture. These things may work for you or they may not. Everyone’s disease is different, period.
For any of you that want to read more about my journey and my condition be sure to do so. I hope that if any of you are newly diagnosed that you take this advice and that it helps you with your journey. Feel free to reach out at any time to talk or discuss with me, I’d love to help!
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Your trusty, gutsy gal,
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