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A Letter to my Newly Diagnosed Self

Hi,

I know this is extremely tough to take in. Your doctor just told you that you have Crohn’s Disease. He or she said that Crohn’s is an Autoimmune Disease in which there is no cure and you will be on medication indefinitely.

Hearing this diagnosis is difficult

This isn’t easy and it’s okay to be crying right now. It’s a scary and unpleasant thing to hear. You’re human. So be human right now and feel all your feelings. Don’t be ashamed to feel your emotions, and don’t think you need to hold them in.

It’s okay. Free yourself from bottling it up and give yourself a moment to expunge. It will be cathartic. I’ll be here waiting…

Okay, now that your eyes are puffy and red, and you feel a tad better, I’d like to say some helpful things to you.

The things I’d say to my newly diagnosed self

However, I need your full attention and focus. And I need you to tap into that part of you that is wise and level-headed. Yes, don’t underestimate yourself. You, my friend, have wisdom and poise inside of you, ready for moments like this. So awaken those parts.

Now. I’ve lived with this diagnosis for over 8 years so listen carefully because what I am going to tell you, I wish someone would have told me when I was diagnosed. So open your ears and open your heart.

Here we go.

Crohn’s Disease is not easy. It is a serious disease and yes you can die if it goes untreated because your digestive system is vital to your health. It is quite literally how your body is able to function. Period. Not only that but if things get severe and you need surgical intervention, complications can arise that can be life-threatening.

I am choosing to tell you this first because when I was diagnosed, I was in denial. I found it impossible to come to terms with the fact that I had a disease. And in turn, I did the bare minimum, which was to follow whatever my Gastroenterologist told me, blindly.

My Gastroenterologist told me I would be starting Remicade, and that I could continue eating what I was eating and soon I will get better and live a normal life.

He was wrong.

This diagnosis is serious

Don’t make my same mistake; take this diagnosis very seriously. And take this piece of advice with a grain of salt: your Gastroenterologist only knows what was taught to him or her in medical school. And in medical school, they were taught to treat illness with medication or surgical intervention. I want you to really let that sink in. Your conventional medical doctors are great at treating illness by prescribing medication or performing surgery.

And we are so grateful for them because in crisis, medication is crucial, surgery is crucial. Both can be life-saving. But! My dear friend, know that you need to educate yourself in order to beat this. You must now, be your own best advocate.

Yes, starting today your body needs you. Your body needs you to fight for it. You and your body are on the same team. Remember this. Your body wants to get better, just as badly as you do. You are one and the same.

Educate yourself about IBD

So read. Educate yourself. Read about diets. Read about probiotics. Research healing foods.

My dearest friend, food is integral to healing. It is crucial to understand how food works and what healing foods are available for Crohn’s Disease. So read, read, read. And get in contact with a Dietician familiar with Inflammatory Bowel Disease.

Connect with others in the community

Also, talk to people who have Crohn’s. Get on Instagram and Facebook and immediately connect with other people who have the disease. Facebook has groups for Crohn’s Disease so search for them. On Instagram use the hashtag #crohnsdisease and search.

Get connected. Ask questions. Talk to people who are living with the same diagnosis. Find out what works for them and what doesn’t.

Lastly, if you feel sick. It’s because you are sick. If you feel off, it’s because something is off. There will be times where you see a doctor and they do a test and things come out “normal” but you feel terrible. Your body is complex, my darling.

Remember that your body has so many moving parts to it. Relying on one or two tests cannot possibly capture the whole picture. So don’t feel stupid if your doctor tells you things are okay in your body when you know something is wrong. This will happen often, and in those moments, take a deep breath and know that you simply need another opinion.

Don’t put your eggs in one basket. Branch out and dig until you get answers.

Dearest friend, overall, please remember to educate yourself. Fight for your body and cheer it on to get better. Learn about food and how it can propel healing. Connect with others that have Crohn’s Disease and ask all the questions. What works for them, may not work for you, so be patient and always keep trying new things. Listen to your body. Follow your gut. If something feels off, it’s because it is.

You can do this.

I’ll be cheering you on. And yes, you can live and function normally with this disease, but it takes a lot of work, discipline, and laser-focus on your part. So get to it. I believe in you.

With love,

Elizabeth

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie Marie Palumbo moderator
    6 months ago

    This is great! I, too, was in denial when I was first diagnosed and thought “well I can just continue living as I have until I have a problem” and I was SO wrong!
    Changing my diet and lifestyle saved my life, and once I came to terms with being my own advocate, as you said, things really started to change.
    Thank you for sharing this!!
    –Julie (Team Member)

  • thedancingcrohnie moderator author
    6 months ago

    Of course! It’s my absolute pleasure to share because although are stories can be vastly different, most of the time they are similar and relatable. I am so happy you are doing well these days and were able to achieve success with lifestyle change.

    Rooting for you! Thanks for commenting, it means a lot.

    Always dancing,
    Elizabeth (team member)

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