Living with Multiple Autoimmune Diseases

Last updated: May 2021

Like many patients with rheumatoid arthritis (RA), I live with multiple autoimmune diseases. In fact, I shared here that my RA wasn't even properly addressed or diagnosed until after I'd been diagnosed with Crohn's disease.

I’ve previously talked about my long-term struggles with joint pain, primarily in my knees, hips, and toes since childhood. Otherwise, besides a few things that popped up here and there, I was relatively healthy during my teenage years.

An interstitial cystitis diagnosis

In 2006, I was in my sophomore year of college when I thought I had gotten a kidney infection. I went to urgent care, received an antibiotic, and was sent on my way. Except, my symptoms continued. I saw two doctors and was in the emergency room before being referred to a urologist, who diagnosed me with interstitial cystitis, a painful bladder condition.

I am so grateful to say that the medication brought me significant relief for years. And, over time, I found that I was able to taper off of those prescriptions without losing the progress and healing I’d done.

Crohn’s disease

In September of 2009, I abruptly began experiencing significant GI distress. For years, I struggled with running to the bathroom, having urgent and frequent diarrhea, nausea, vomiting, and other unpleasant symptoms. I had test after test, hospitalization after hospitalization, and medication after medication.

Finally, after six and a half years, I was diagnosed with Crohn’s disease, a type of inflammatory bowel disease. I will take medication for the rest of my life to manage this disease as, without it, I was almost totally sidelined from my life.

An RA diagnosis several months later

Several months later, my gastroenterologist took seriously my continual complaints about joint pain, swelling, and stiffness - symptoms I'd had most of my life by then. As I mentioned here, these had previously been ignored or dismissed by physicians in the past.

As I suspected, I was diagnosed with rheumatoid arthritis and also RA-related Raynaud’s phenomenon at that point.

Treatment for my health conditions

After my RA diagnosis, I was put on a biologic medication which has since been able to keep both my Crohn’s disease and my rheumatoid arthritis symptoms at bay.

I see separate specialists for each disease (a gastroenterologist and a rheumatologist, respectively) to monitor my conditions. My gastroenterologist happens to manage my biologic medication prescription, dosage and frequency adjustments, and associated lab results. But, my rheumatologist routinely reviews that information and weighs in with any related opinions or ideas.

While not considered "autoimmune" directly, I also live with migraines and insomnia, both conditions that also require specialists, medication, and their own management.

Living with multiple autoimmune diseases

It's been just about 5 years since my most recent diagnosis, which has made me reflect a lot on living with multiple autoimmune diseases. Here's what I've learned in that time.

1. Write everything down. From tracking appointments to medications, schedules, and symptoms, it's imperative that I keep good notes. It's so easy for me to look back and wonder if my joint pain increased last week or the week before, or if it was my Crohn's medication or my RA medication that gave me that dry mouth side effect that I needed to ask about.

2. If possible, utilize specialists in the same network. After many years of not doing this, I have found it to be significantly easier for physician communication and access to records if your doctors are within the same network or hospital system. This also reduced my burden as a patient, because one doctor could look up something or reach out to another doctor without my needing to get in the middle.

3. Communication is everything. Sometimes, it's important that my gastroenterologist knows about my RA symptoms, and that my rheumatologist knows about my GI symptoms. Sometimes, there is systemic overlap that I might not be aware of or able to identify offhand, but they can. So, I try to give a systems overview to each doctor at the beginning of each appointment.

If you manage multiple autoimmune diseases, what other tips do you have for managing symptoms, treatment, and care?

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