Several of our programs rely on the strength of community.  Community makes each of those programs and the experience and results for your clients that much better.  There is an experience I went through recently that I wanted to share with you because I feel like it emphasized the need for a community and I believe within that community there should be health educators (health coaches) to make them stronger and cut back on misinformation.

 

The History of Communities

Through history people have found strength in communities formed in worship and religion, sports, education, addiction and recovery, and political affiliation. These are people who share the same beliefs and intentions and add strength, purpose and conviction to their lives. One of the most important human needs is to “belong”. Belonging also fills other human needs of importance, contribution, socialization and security.

 

 Communities in Social Media

 

There are Facebook groups for weight loss support, cleansing and detox as well as physical ailments.  They provide support, answers and the feeling that you are not alone.

 

Community Contribution to Health Care Experience

 

I have been seeing a Hematologist (nothing major and it is all under control)  for about 4 months now.  He is one of the best in our city.

He really knows what he is doing and predicted within one treatment – where I would be today.

My doctor is great.  His nurse is wonderful.  The people who do my labs are good.  The nurses who do the phlebotomy are phenomenal.

 

BUT – here is the thing, they are all disconnected.  They have their part to play and they pass patients from one to the other…there is something missing.

The thing is…they are all doing exactly what they should…but there are things that get missed because there is nothing and/or no person to pull them together.  The patient either needs to advocate for themselves…or have someone who does.

 

In my case, the community did it for me.  Because they were all undergoing the same kind of treatments and had different levels of experience, the information they could share bridged the gaps.

 

What I learned from my community:

First, let me tell you….I have a very common situation, it is called Hemachromatosis and it is genetic.  I just have too much iron and it causes problems for my internal organs…iron overload.  This sounds really gross…but the treatment is simple…blood letting (phlebotomy)…they drain blood intermittently to reduce my iron.  It is about as natural a treatment as there can be.  My first appointment was a disaster…they dug and dug and dug and dug and couldn’t get a vein…then it became pretty unnatural…they put this plastic port (pretty ugly) in my chest and ran a tube into the jugular vein.

 

  • When they told me I needed to get a port, I knew they were having a really hard time getting a vein – but boy, surgery to put a port in sounded really extreme.  Being connected to a community of people with the same experiences…all I had to do was ask and there were 40 people who had ports and some liked them and some didn’t, but they all agreed they needed them.  They let me know where it was going and how it would work.  I had this vision of a tube with a screw top lid.  I’m glad the designers had a better vision than me.  Anyway – the community gave me a feeling of security through the whole thing.
  • In my case, the community filled in for me.  Because of the people in the community,  I knew that there was a prescription cream that numbed the port area for that huge needle to go into and using it makes it not hurt.  Those port needles are 18 gauge.  H-U-G-E – and if you use the cream – you don’t feel it going in or out.  I had to ask for it because they didn’t tell me.  I know it made a huge difference because one time they had to pull it and replace it and the cream had worn off.  It hurts.
  • I was having a 1/2 litre of blood removed each week.  That’s a lot.  I did great the first 2, and after that, I would go home and sleep for 24 hours.  My group told me about IV’s their nurses gave them that would make the entire process easier and give them their energy back faster.  They give you these things if you ask for them – but don’t offer it.  Most patients wouldn’t know to ask for it unless someone told them.
  • Coconut water, red grape juice and gatorade help to get through it.  At the hospital they give you water…and at one of them, they offered a granola bar.  I started drinking lemon water early and then took my super dooper smoothie and it helped.  I wouldn’t have known without my community.

 

A couple of the nurses I talked to said those communities were dangerous.  I agree that there is some misinformation – but for the most part, it is positive and healthy.  Wouldn’t it be nice if there were health coaches in those communities offering educational material and bridging the gap between the doctor, nurse, phlebotomist and lab people.

 

Here’s the thing…

  • The doctor did his job – he listened to me, read the labs and prescribed a course of action that solved my problem.
  • The nurse was a dream, she explained everything to me – sometimes a couple times and contacted me immediately with changes in direction after labs were received and got me where I needed to go and to the appt’s desk when I needed to set them or change them.
  • The nurses took my weight, wore their masks and got the labs.
  • The phlebotomists (nurses), poor things…if you could see this process, it was tough.  With a port, gravity does not release the blood, they have to suction it all out.  They pulled and flushed and pulled and pushed and flushed and pulled some more.  Their hands had to be exhausted by the time they finished.  They never complained.  They did their job too.

I have people telling me how good I look!  I look healthy again!  I feel good and it was a really good experience.

So, what was missing?  The patient needs to be a self advocate OR have someone to advocate for them (health coach) OR have a community for support.

No one should have to settle for less.  A good team,  a good plan and successful execution.  I was really lucky to have such a professional, capable medical team and am really happy to have belonged to a community who filled in the gaps for me.

Hematology is in the Cancer Center.  Can you imagine the good a community with the help of a health coach would do for cancer patients?  My husband went through cancer treatment in 2007.  This would have been good for him and honestly, it would have been good for me too.  I could have been more help to him with a supportive community.  When I asked the doctor what he could eat to help with immunity and strength…she said nothing.  They served donuts in the lobby.  WE ARE SO NEEDED.  Community would support the coach – coach would support the community – would bridge the gap with the medical team and REALLY advocate for the cancer patient.

 

What is your experience with community?

5 Comments

  1. Cathy

    Something I’m slowly coming to realize: the body itself is a community – each organ and tissue and cell has its own role, yet needs the expertise of the others to function at their best. It’s so important as a patient to have a community of experts and supporters and hand-holders helping us through whatever crisis. I love this story of collaboration and support, Cathy.

    Reply
  2. Johanna

    Cathy, thanks for sharing your experience and story. Wow! What a story! I’m so happy to hear about the community you found and glad their wisdom guided you. I too love these types of communities, I think they are s great way to share, educate and support. Sometimes it’s just easier vent or ask questions in a community where you can get various feedback and then choose the best option for yourself based on the feedback you receive. Also, the best thing about communities is that they let you know that you are not alone with your concern and that there are answers when you feel confused or hopeless.

    Reply
  3. Michelle

    Cathy! I am so sorry. I’m glad to hear that you’re ok and it’s nothing major.

    I’m fortunate to be a part of several communities. My education community. The community of my former employer. My condo community. My coworking space community. My 40+ Rocks online community. 🙂

    This post has made me even more grateful for them. It really does take a village.

    Reply
  4. Shelley ugyan

    wow- this is a powerful post, Cathy. I get it in my bones! I believe as well we need professionals- of course they have their place. But, I think we give our power away to them many times. Community supports, but it allows us to find our own footing. So important! thanks for this!

    Reply
  5. april

    wow, cathy – you’ve been through a lot! i’m very glad that you have kind, competent health care workers in your corner. but yes, i learned firsthand that we must always be our own advocate (or the advocate for our loved one). pleased to hear that you found a community that was helpful and well-informed.

    Reply

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