Sam Blakeley: Beyond My Personal Battle with Crohn's Disease

This blog post is part of a series of storytelling pieces, “Beyond My Personal Battle”. The interview-based series is dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.

Sam Blakeley

What is your name and your health condition?

My name is Sam Blakeley and I am from Boston. I have a diagnosis of Crohn’s disease, psoriatic arthritis and psoriasis.

Are those linked in any way?

They are, which I came to learn after being diagnosed. I always say Crohn’s disease first because that was my first diagnosis and I’m under the impression that the other two came about because of a biologic I was on for a year.

What was life like leading up to your diagnosis?

I was diagnosed when I was about to turn 22. I was living a very normal life. I was a daycare teacher and in college. I was very social and active in my life outside of work and school. I was very health conscious.

I did not show any symptoms of Crohn’s before my first flare up two weeks before my 22nd birthday. It all started with what I thought was just a virus. I got sick one night and had these body aches. I actually called into work saying I was under the weather...hours later I was in the emergency room and had my first hospital admission. Abdominal pain and joint pain were the start of my symptoms during that hospital stay. I was there for about a week and they sent me home on a bunch of different antibiotics and steroids. No information other than the fact that I had a lot of inflammation in my ileum. A month later I was diagnosed with severe Crohn’s disease in the ileum.

Could you describe Crohn’s disease a little bit?

In the simplest terms, it is chronic inflammation of the G.I. tract, but it can manifest in other areas of the body like the joints, eyes, and skin. For me it’s my ileum and colon. For others it can be other parts of the G.I. tract. From others I’ve learned that every single case of Crohn’s disease is individual to the person. It also has a huge impact on the brain, especially with anxiety and depression. When I had a flare my anxiety was so high. I was having panic attacks. It felt like overnight my life was flipped upside down. .

What was life like right after your diagnosis?

When I was diagnosed I had just started a new job, and I was trying to make sense of the diagnosis itself. I was trusting everything my doctor at that time was telling me to do, so I immediately jumped on medication. I got on a very intense medication along with steroids and antibiotics.

I really just dove right in and trusted the doctors. I ended up leaving my job and school. My life was put on pause. I was on bedrest for six months. I did months on a liquid diet, which was a huge adjustment. I’m a foodie but I just had no interest in food. I jumped on medications without doing any research to figure out if that was right for me because that’s what I was told to do. I feel like underwent such an emotional and physical transformation simultaneously, so life right after I was diagnosed felt very much paused.

At what point did things change for you?

On my 24th Birthday.  I went cold turkey off of all of my meds. I was sick as a dog. I wouldn’t recommend doing it the way I did it. I just had enough. My lifestyle and my diet didn’t make sense for a person with Crohn’s disease, so I never had that time to heal and had immediately taken on the side effects of the medications along with the disease, all at once.

I also will say there is a time and a place for medication. Prednisone saved my life at one point and I’m grateful that we have medications available. It’s hard to imagine otherwise. There are such amazing doctors, so I don’t want to come across that I am anti-medication. I think there is a great possibility I will be on medication for some part of my life again. But I needed this time because I’m still so newly diagnosed. Three years is not a lot of time so right now I’m doing a lot of research. I know there could come a time when I’m on meds and I’m just grateful I’ve had this time to figure out my triggers and what is best for me.

What is your message to individuals who are not part of the chronic illness community?

I think I would want people to understand that it’s all-consuming and very unpredictable. So something that I’m really grateful for is that I work for an employer – I am a nanny to four kids – who believes in me. When they believe in me it makes me believe in myself more and I am better able to follow through. Also that your reality is your attitude. The more I tell myself that I’m sick or I’m sad about being sick, the sicker and sadder I become. So the more I tell myself I am healing, the more I actually heal. When I first came across Beyond My Battle and I was reading about it, that’s when I saw how much my beliefs aligned with the organization.

How has your diagnosis altered your perspective on life?

I wholeheartedly believe it has made me a better person. I approach all people with kindness. Not that I wasn’t approaching people with kindness before, but it has made me much more empathic and I feel like a much stronger person at the end of the day. There has been no other life experience that has taught me as much as my diagnosis has. A lot of people are looking towards tomorrow, whereas I feel this has made me sit in today.

What motivates you to push forward and stay positive?

My boyfriend is a huge support. He has a chronic illness, as well and very much understands what I’m going through. Also my family, his family, and the families I nanny for make me want to show up for my life. I feel motivated because they support me no matter what, even if I’m having a flare.

When I was first diagnosed, I was focused on everything I couldn’t do. I couldn’t drink or go out dancing with friends. I actually lost a majority of friendships I had. I realized those friendships were not based on much substance. So I learned a lot about my support network. Since then, connecting with like-minded people on Instagram who are going through similar circumstances makes me feel so empowered. I learn something everyday from someone else and consider it part of my self-care toolkit.

What is in your toolkit of self-care?

I truly feel like this illness is my greatest teacher. I’m always building that toolkit. I started seeing a nutritionist, chiropractor, and acupuncturist. I started reading and learning about the body and how it heals. Another thing that has helped me so much is yoga. When I got sick is when I fell in love with yoga. Some days all I could do is sit there and breathe and other days I could move my body and gain confidence.