Deena Bingham
While visiting my Gastroenterologist’s office last month I saw a list in my chart that said “Care Team”.
Under the heading was a list consisting of my primary care physician, my rheumatologist, pulmonologist, cardiologist and my SCIg (Subcutaneous Immunoglobulin) pharmacy. That one of my doctors has this list is quite impressive alone, but all of my doctors actually have it and communicate with each other regularly! When I tell people this, they are always astonished.
I get asked a lot of questions about my health and healthcare. The question I get asked the most is, “How do you get doctors, nurses, specialists and hospitals to communicate with each other”? This isn’t a straightforward answer. Bear with me because I am going to reiterate some things that I have already said in past posts.
Not Just One Diagnosis
Most people living with chronic illnesses do not have only one illness, they usually have several. This is pretty common in the autoimmune world. I am a perfect example of that. I have Lupus, Crohn’s, Asthma, Arthritis, many “others” and the occasional bout with anxiety and depression. I know! I’m a mess on paper :-). If you deal with chronic illness, you are also going to deal with mental health because mental and physical health go hand in hand. I am generally a happy and optimistic person but my health does cause me to have dark days and anxiety. It’s just unavoidable. If you feel you’re struggling mentally then please tell someone.
My Care Team
I did not always have a care team that talked to each other, resulting in years of frustration. There is a lot of research out there that prove physical and mental health should be treated together but, sadly it still isn’t a priority, I had a doctor tell me once that I didn’t have Lupus I was just depressed! I had to be purposeful about seeking these wonderful professionals who are now on my team!
That is the key phrase “ON MY TEAM”! If your healthcare professionals aren’t on your side, don’t listen to you, write you off or are condescending, you need new ones. Also, you should have an awareness of all aspects of your health, test results, what medications you are taking, communicating anything new to every person involved with your health and speak up when you feel you are not being heard, this includes co-workers, family and friends.
Knowing your health journey in great detail helps to avoid frustration and dangerous mistakes with fewer risks to you when everyone on your team is aware. Having a chronic illness is a career and we need to treat it like a job. When you have this much going on, you are a career patient. I wrote an article about this in 2016 and even though I would add a few things today, it still holds true, http://www.thegoodlifewithlupus.com/living-with-lupus/my-journey-to-becoming-a-career-patient/.
Be Your Own Advocate
My medical relationships did not happen overnight. It took me years to have my team in place, but keep searching, be proactive and encourage your doctors to communicate. If you are articulate about the ins and outs of your health, then you’re more likely to be taken seriously. “Invisible” conditions are complicated, so advocate for yourself, research, be knowledgeable and start building your team.
Articles that you might find useful:
https://lupus.net/living/building-care-team, https://www.lupus.org/resources/build-the-support-system-you-need-to-cope-with-lupus
Once again, thank you for sharing this journey with me and I hope you find your joy today.
God Bless you,
Deena
