Background/Purpose: I was diagnosed with MCTD at age 25. My priorities were understanding a disease I had trouble pronouncing, and trying to learn to live with it, not die from it.  I did not think I would live to an old age.  40 years on, here are my strategies on aging well with MCTD that may help rheumatic disease patients and professionals who treat them, to either avoid my errors or employ helpful behaviors. I’ve learned these through trial and error and also observed them in others “chronically managing.”

Intervention: Since I did not believe I would definitely reach old age my lifestyle reflected that. I was told, “Some patients do very well; others live only a few years.”  That conversation couldn’t be unheard. Why plan for an uncertain future?

As each year brought improvements in the care of autoimmune diseases, and the chance I would have a future, my hope increased. One pivotal period for me was when histamine-2 blockers and proton-pump inhibiters were developed.  I feel such gratitude for those involved in the development of gastrointestinal motility and acid-suppressing drugs. My quality of life improved overnight. Any medical improvement may be “right around the corner” so why not plan for that? I began to contribute to a retirement account at work.  Once I felt I might have a future, I began to plan for one.

A doctor said to me “some things take a “tincture of time” to resolve.  Along with managing MCTD, I am subject to everyday problems and unrelated diseases.  I appreciated this concept while waiting for hydroxychloroquine to kick in; By simply resting joints or muscles before deciding I am flaring gave me time for clarity.  Although not appropriate for all situations, there are times to wait.

When in pain, I move slower, and my focus lessens. I mitigate by managing my calendar better, so I am not overbooked or hurried.  I leave earlier for appointments.  With joints damaged from years of swelling and arthritis, when I rush, I drop or forget things.  Others’ time is valuable too, so I strive to be on time. I cancel plans when rest is required, something not always understood by others.

Early in my chronic illness journey I found myself relying on and at times being disappointed by friends and family.  Experiencing a lack of understanding and even denial at diagnosis, I learned the reality no one person can always be there for me.  Sometimes, I’d call only to find others caught up in their own situations, not tuned into me.  This is normal. How happy it makes me when I get help, a listening ear, or a sense of understanding.  But maturity allows me to let it go when I don’t. Adding frustration and disappointment to things doesn’t help. The process also developed my resilience and allows me to empathize with others.

Alongside the emotional work of understanding, forgiving, or choosing to move on, I began to simply increase my support system. Online and in-person support groups.  Viewing close friends/partner as adjunct support, rather than primary. These actions release those closest to me from the pressure of being “always on.”

Maintenance: Today, I prioritize activities and investments that promote health, physical, mental, emotional and spiritual.

Quality of Life: By doing so, I am able to live a better, fuller and perhaps even a healthier life.

Takeaway: May more of us live healthier years with, even in spite of chronic illness, even into older age.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/mctd-and-aging-resilience-required/