As a Sjogren’s patient who writes a blog and is very involved with the Sjogren’s Foundation, I get asked a lot of questions. But since I also have a full-time job and other commitments, I am not able to answer everyone’s questions and support other patients on a daily basis. Recently, I was asked about hair loss. This is a common issue with some of the drugs we take to control Sjogren’s, and it can really impact self-confidence. Because I am unable to answer everyone’s questions, I am writing this blog to tell you how you can connect with other patients to share ideas. This post is dedicated to my reader who asked for support on hair loss! She had the right idea — connecting with Sjogren’s patients is how we can learn to live well with chronic disease!
Connecting with Sjogren’s Patients
It is natural to seek advice from others who have similar experiences. This is true in every walk of life. It is how we expedite trial and error to learn what might work best for us. So it makes perfect sense to reach out to another person dealing with chronic illness. And these connections can mean so much more than quick education. These connections can give us emotional support and allow us to know that we aren’t alone dealing with this disease and that others do understand. It truly can help diminish the feelings of isolation.
This is why I love the Sjogren’s Foundation National Patient Conference (coming up April 3, 2020, in Phoenix, AZ). In fact, if you’ve been to the conference within the past three or four years, you have seen me stand on stage. My welcome to the group is given with tears in my eyes: “This is the only place, one time each year, where I know that all people in this room can truly understand my life!” The feeling in the room is palpable and I am so grateful for that moment.
But what about the rest of the year? And what about the opportunity to connect when people are not able to travel? Enter Smart Patients.
Smart Patients — Sjogren’s Conversations
Smart Patients is an online organization that creates patient conversation areas. The areas are segmented by disease so patients with similar challenges can find one another. You are able to join multiple groups (if you have a few diseases you are managing). There is also a “tag” system for different topics you wish to follow. Although the Sjogren’s Foundation does not own or profit from Smart Patients, it does support it as the patient-to-patient communication channel of choice. The service is also free to patients.
To join Smart Patients, just go to www.smartpatients.com and sign-up to join the Sjogren’s Conversations. The site is moderated by a Smart Patients employee and the conversations are between patients. there is no selling within the community. It is a secure site. Once you have your login information, you will come to the Conversation page where you can search for posts on specific topics (such as hair loss, where you will see entries about taking Biotin and other supplements and medications).
You will also see what topics are most recent and rise to the top of the page. Once you are in a conversation topic, you can post your own thoughts, ask specific questions of the people in that thread, or just read and learn. You can also post a new question to query other patients about specific experiences. This is particularly helpful when some new ailment pops up. By posting on Smart Patients, you can see if others have had the ailment and whether it may be associated with Sjogren’s (so a Rheumie visit is in order) or if you need to go to your PCP or another specialist. As you know, there are a lot of surprise ailments and side-dishes to living with Sjogren’s and Smart Patients gives us a place to see if others have had a similar experience.
My Smart Patients Page
This is my Smart Patients Page. When I have a challenge or when an OTC product stops working for me, I land here. On my page, you can see the Welcome from the moderator and then a topic called “New Help for Dry Mouth”. In my Topics I have several items including:
- Kidney Function (I have Stage 3 Renal disease),
- Sjogren’s Pen ( a private group for a specific company’s clinical trial program), and
I don’t comment a lot but I review a lot. There are some amazing patients here, including physicians and nurses that offer medically-informed commentary. There is also the intelligence of the whole patient group!
Smart Patients for Emotional Support
Smart Patients is also a place where everyone understands what you are going through (from a disease state). And it is not uncommon to see a post like: ” I am having a bad day. I just need to tell you all that I really hate Sjogren’s”. Messages of support are returned! People may discuss other life stressors and ask advice on calming the flare that has followed. Knowing that there are people that understand your disease and how a flare-up can derail your life is truly helpful! It is amazing how a sympathetic and compassionate ear can diffuse sadness.
I hope that some of you are already on Smart Patients and can welcome new patients as they join. There are few things as powerful as patient-to-patient communication within a safe and supportive environment! Connecting with Sjogren’s Patients on Smart Patients is that safe and supportive place.
If you are new to Sjogrenslife (or new to Sjogren’s) and would like to view one of my favorite posts, please do read 10 Stages of Autoimmune Grief.