Background/Purpose: In the fall of 1985, I was not feeling well. I attributed my tiredness, weakness and malaise to stress and carried on. Walking upstairs I was out of breath and muscle sore.  I went to my aerobics class and could not keep up.  I tried all manner of stress reduction that had worked in the past for me.  Reading, walking, talking to friends, naps.  Many naps. Then I woke up one morning and fingers on both hands were very swollen. They hurt and I couldn’t close them. As a 26-year-old, doctor visits were infrequent, but I called a local Internist and made an appointment.  After my bloodwork was relatively normal, he declared I was fine. I asked for a referral.  He referred me to Cardiology.  After a cardiac workup, the doctor declared I “did not have a disease in his specialty.”  He referred me to a Rheumatologist.  In a few short months I was diagnosed with Mixed Connective Tissue Disease (MCTD).  The rashes, fevers, joint and muscle pain, and later swallowing and GI problems made sense.  My extreme fatigue and associated issues had a name.  Medical therapy started and over the next years, I became used to adjusting to various therapies.

Intervention: A diagnosis with chronic illness taught me to learn new skills.  These included enhancing my ability to listen to and share with medical staff so I could receive the best care. This applied to communication with friends and family.  Making modifications so I could still do the things I enjoyed.  At the time I loved racquet sports.  But when I would play the skin on my fingers would split from the stress over my skin and joints.  By using leather gloves when playing any sports I found it protected my hands and made my time enjoyable instead of my being preoccupied with hurting myself.  Although a small change, this was pivotal to me because it encouraged me to make changes anytime I encountered an obstacle.  When the Lupus part of my disease was most active, I requested a work accommodation away from windows and sunlight.  Working in training technology when the disease was more active, I would request non-stop flights when traveling for work to reduce joint and fatigue issues.  The swallowing issues that arose when the Scleroderma part of the disease became more evident were harder to accommodate.  My doctor prescribed medications that represented the latest approaches to handling motility and swallowing issues.  But the most important thing he did was empathize with how difficult this issue is to manage.  He expressed confidence that I was able to handle this challenge and noted how well I was faring overall.  More than anything, living with a chronic illness has required me to adapt and change according to my circumstances.

Maintenance: I can actually thank the entrance of illness in my life in my 20’s for teaching me life lessons about developing personal resilience and teaching me to depend upon others when necessary.

Quality of Life: After nearly 40 years living with MCTD, I can say I am living well with chronic illness. My disease has been in remission for the last 15 years.  GI (mainly swallowing) issues have never abated but I manage them via medication and lifestyle modifications.  I retired early from a 30-year career that I enjoyed, and look forward to aging well, something my 26-year-old self could not have imagined.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/living-well-with-chronic-illness-decades-with-mctd/