The Importance of Being in a Community of People Who Have Your Condition
Community: A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.
Before leaving the hospital back in April 2015 with my new diagnosis, I made sure to get connected with a fellow patient that also had the same condition as me. I had asked my nurse to connect me with someone else who was also on total parenteral nutrition (TPN) and who has short bowel syndrome. I needed to know that I wasn’t leaving the hospital completely alone in this. It took months of trying to connect, but we finally met and it was so good to know that someone else understood how I felt. There’s no feeling like sitting across the table from someone and finally be able to ask the questions that have been burning up inside you. To be able to vent your frustrations and have some say “me too.”
The reason I’m writing about community today is because after being on TPN and having short gut for over three years now, I finally managed to start a TPN support group. And man, did it ever feel good to sit a room with others who get it! I have family and friends around me who do their best to understand. But if you’ve never had a severe chronic illness, have never had to rely on a feeding tube to sustain you, and never had to go through life threatening surgeries – then no matter how much you try, you just will never understand what we really go through. And that’s OK. If that’s you, then read on so you can help encourage those in your life who are ill to find their community. You can still be a huge part in our stories!
No matter what walk of life you’re going through, community is important and what your community looks like will constantly be changing. And that’s not a bad thing, which is something I’ve really had to learn over the last few years. When you’re in school, you tend to hang out with kids that have the same interest as you. In university, others that are in your classes, your residence or your social clubs. And then usually we find our lifelong friends as we’re adults and working. When I had to stop working, I lost a huge community of mine and was lost for a long time.
I’ve now found myself new communities. Building into one on one relationships and realizing not all groups have to be large. Spending a lot of time with other mom friends and helping my daughter also start building her own communities.
But here it is, I am now building myself a new community with others – who, when I tell them I’m not feeling well, they actually get it. When I tell them I’m exhausted today, they understand the fatigue I’m talking about. When I tell them that my vitamin D levels are up and my TPN infusions have gone down by one day a week, they celebrate huge with me because they get it! Again, I know that I can celebrate and cry with my family and friends who do not have chronic illnesses, but there’s something to be said when you have someone’s ear that can actually empathize. Who have had similar disparages and celebrations.
Sitting in a room for an hour and a half with fellow TPNers and being able to discuss different products, diets, and frustrations, being able to talk about our medical teams, and understanding that none of us could stay too long because of our energy levels. There’s just something to be said about having that unspoken understanding that comes almost right away versus after three years of relationships and still having to explain how I struggle on an everyday basis.
So here’s my challenge to you: Find yourself a community, and if you can’t find one, start one! No matter how rare your situation may be, you’re not alone. Even if your disease is incredible rare, there’s at least someone out there that can empathize with your circumstances. Find them! That’s the joy of the internet. I have come to be a part of a few Facebook support groups and I started my own for those on TPN in my city and now we’ll be meeting every two months! Who knows what it’ll grow to be. But someone had to start it, and I’m so glad that I’m the one who did it. It won’t happen overnight, but I can promise you that someone else also needs that support group and eventually you guys will find each other. Find your community.
So now after over three years of being sick, I don’t feel alone.
I know I’m not alone. Now I have my little TPN and short gut family.
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Follow this journey here.