In this month’s Sava Wellness Community Interview Series we get to discover the experiences of Raegan (she/her). Raegan has a different perspective than the other interviews we have had so far because she always assumed that her symptoms were how her body existed. This is an important point to note because if you have something that is making your life difficult to endure, this is not “normal” and you should talk to someone who can help you (like Raegan found with her caring doctor). Please read on to learn more about Raegan and her new business!

Hello Raegan! It is great to talk with you today. Could you please tell us a little about yourself?

I live in the US. I live part time in NYC and part time in Miami. I have an amazing wife and stepdaughter. They are my world. My boxer dog, Leila, crossed the bridge almost 2 years ago. Leila was my soul dog and the loss was extremely difficult for me. I don’t know how I would have handled it if not for the love of my wife. My all-time favorite thing is going to Disney World! While there, I love taking photos and documenting all the magical sights. Disney means a lot to me. It’s a place where I can freely be myself without judgment. Additionally, I love animals, reading, and spending time with loved ones. 

What terms do you like to use in relation to your illnesses/disabilities?

Autoimmune or chronic illness. I don’t necessarily use the terms often, but on occasion if I am discussing my illnesses, that is how I refer to them. More often I just refer to them by name (ulcerative colitis, endometriosis, chronic fatigue).

If you have a job outside of your chronic illness and want to share about it, can you please tell us what it is?

I am a LMSW (masters in social work). I have been working as a clinical therapist for over 10 years. During the shutdown in 2020, I began working remotely, and have been remote ever since. 

Do you have a diagnosis for your symptoms?

I was diagnosed with Endometriosis in 2006, Ulcerative Colitis in 2017, and Chronic fatigue in 2021.

Does having a diagnosis help you?

I had symptoms most of my life. Some relatively mild, others severe. Receiving a diagnosis was extremely helpful in that I was able to get medication that actually helps me. It’s also helpful now that I am at least aware of what’s going on and how to better help myself. 

How long did it take for you to get a diagnosis?

I wasn’t necessarily aware of the severity of what was going on with me, so I’m not sure that I was actively seeking a diagnosis. So although it did take several years to be diagnosed, this was probably my own fault. 

When did you first realize that you had chronic illness and how has your journey been since then?

My symptoms got worse and worse. Eventually they got so bad that I ended up bedridden, and then hospitalized for quite a while. This is when I was diagnosed. Since then, it’s been a rollercoaster, but I was so lucky because my doctor was incredibly caring and made certain to figure out the correct medication to best help me. This medicine has been extremely effective and my symptoms are much more manageable. 

How has your experiences of the world changed since your symptoms started?

Due to the fact that I’ve had many of the symptoms for most of my life, I can’t really recall knowing any different. This is why I was not actively seeking a diagnosis; I thought this was just how my body functioned. 

Which of your symptoms do you find the most debilitating and why?

During a colitis flare, the symptoms can be severe. There are times I am barely able to function. The colitis bleeding causes dangerous anemia. In the past, the blood loss caused fainting spells. The pain can be excruciating. Being that the flare originates from active ulcers in the intestine, and ingesting anything will exacerbate the symptoms, there is generally no effective way to treat the pain. This is the case for me personally, some people are able to tolerate various pain pills and other treatments during a flare. 

Can you describe what a bad day symptom-wise looks like to you?

Pain that causes me to double over, sometimes making it difficult to breathe, uncontrollable bleeding, urgent and excessive use of the restroom, unable to get out of bed due to anemia and chronic fatigue, very low body temp, chills, dizziness, and heightened anxiety.

When you have a good symptom day, what do you like to do?

I like to get everything done. Work, cleaning, laundry, food shopping, anything I need to complete. I also like to work out and go walking when I feel well enough. Exercise really helps the endometriosis symptoms, (which can be very painful) but can sometimes bring on colitis symptoms. 

What has been the most helpful for you as you have gone through this journey?

The right medication has been pivotal in having more good days. I am so lucky to have found such a caring and patient wife and stepdaughter. They always want to help me in any way possible, they’re understanding, and most importantly for me they never ever make me feel like I’m a burden. I am so grateful to have them. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

I hope people can become aware and more understanding of “invisible illnesses.” You never know what someone is dealing with. 

To follow along with Raegan’s favourite hobby, Disney, please follow her Instagram: @disney_raenbow. Also make sure to follow her new business, “my wife and I make homemade, all natural dog treats and biscuits. We just started a small shop on Etsy called ‘Leila’s Pup Treats’ named after my old dog. The site is leilaspuptreats.etsy.com and the Instagram is @leilas.pup.treats”

Thanks Raegan!