What Is It Like To Have Multiple Chronic Illnesses With Multiple Doctors?
I live with psoriasis, psoriatic arthritis and fibromyalgia - among a few other conditions. I've lived with psoriasis for over 60 years - and psoriatic arthritis for over 25. Seeing multiple doctors and juggling multiple appointments is the norm for me.
I am reflecting over the past 60 years, misdiagnosis after misdiagnosis, treatment after treatment. Let me share a bit about what it's truly like to have relationships with multiple doctors and keeping all my conditions managed.
New symptoms can mean a new diagnosis
Psoriasis and psoriatic arthritis are inherent in my life. I see a dermatologist for for my psoriasis and a rheumatologist for my psoriatic arthritis. I also have a primary care physician that treats my body and is aware and mindful of my many different diagnoses.
About 15 years ago, I felt new symptoms in my body. I was confident they were not PsA related. Everything felt painfully different. My rheum told me it was a PsA flare. Fine, but I wanted a second opinion. It was this second opinion, by a second rheumatologist that I was diagnosed with fibromyalgia, in addition to my PsA.
If you're keeping count, I see 2 rheumatologists, 1 dermatologist and 1 primary care doctor.
How I juggle my many different appointments...
Managing chronic pain and chronic illnesses forces me to be more mindful and in-touch with my body and how its feelings. Honestly, there are times when I may be in pain and don’t know what illness is causing the problem. It took me a while, but I had to be able to separate the symptoms.
I have even had to ask myself if my pain is from an existing illness or a new one? This is how I attempt to manage several illnesses at once. It’s not easy. Especially with so many specialists. There are always appointments, lab work, and a long list of medications.
The one good thing that has come out of this is that they all look at the whole big picture. They might not agree, but I believe they have my best interest at heart. They are all tracked together on one patient portal.
I will not let my chronic conditions run my life.
It's important my doctors know about everyone - and be aware of my potential triggers and conflicting treatment. It usually starts with me having to advocate for myself and pushing the topic of side effects.
It's important to me and my health that all my doctors to know my entire treatment plan and how it will impact what they may want to treat me with. My advice to you would to keep a good dialog with your healthcare team, share business cards with your doctors. Ask lots of questions and never let them rush you.
We as patients juggle a lot. For the sake of our overall health, we cannot let even one ball fall. Trust your instincts, listen to your body and never be afraid to get a second opinion.
If you're juggling multiple doctors, find what works for you.
Managing just one condition can feel like a lot - I see you. Managing more than one? I feel you. We are all different, with different situations, outcomes and lifestyles. I'm 65 years old and I wake up every morning with a smile on my face. Our lives are so much bigger - and more worthy than the pain we face.
When it comes to managing it all, find your own organizational style and communication methods that work for you - and you alone. It doesn't have to be perfect, it just has to be effective.
We will always be works in progress and that's okay. We can change our minds, start new routines and find new ways to check in with our bodies. Stay strong out there.
This or That
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