The Mighty Logo

When I Said Goodbye to My Long Hair a Year After My Diagnosis

The most helpful emails in health
Browse our free newsletters

It took more than two years before I was finally diagnosed with mixed connective tissue disease (MCTD). Jumping from several doctors to another, I had thought of giving up prior to my final diagnosis due to the overwhelming emotional stress, financial issues it cost me, tedious travel that went with the medical appointments, several hospital confinements, and loads of procedures and tests. Though the diagnosis gave me a big question mark about what MCTD was all about, considering that it was the very first time I heard about it, I took it like an answered prayer.

It was somehow a relief because finally, I can have a better course of treatment. But a few months after the MCTD diagnosis, I was struck with another rare autoimmune and neuromuscular disease, that is, generalized myasthenia gravis (MG).

While diligently taking my medicines and following the advices of my doctors, my hair started falling out. I have always taken care and sported my long and straight hair since my teens. I considered it like my very own “crowning glory.” So, that falling hair issue, which was part of my diseases, quite devastated me.

I feared losing my hair. The sight of clumps of my hair on my pillow when I would wake up each day, the hair on my hands every time I would take a bath, my hair strands on the floor of the shower room and of my bedroom, and the unusual number of hair strands on my hairbrush whenever I comb, they would send shivers in my flesh. Until my hair finally became so thin I could see through my scalp, and the strands were coarse and dry. I never imagined seeing myself bald in my late 30’s, or sporting a very short hair at the very least. But every day was like a torture whenever I saw clumps of my falling hair.

One day, I finally bid goodbye to my long hair, and said hello to a very short locks. I thought it was one of my bravest decisions in my life, considering that I worried I might not look OK with it due to my moon-face syndrome (unusually plump or bloated face), as a side effect of prednisone. I thought, “I just have to do it before they all eventually say goodbye.” Besides, I didn’t want to prolong the agony on a daily basis of finding clumps of my falling hair all around me.

When my rheumatologist saw me on my regular visit, she looked intently on my new hair and said, “Oh! So you finally did it before they could outdo you!” I nodded with a beaming smile like hers and replied, “I wouldn’t want to add another unnecessary stress to my dear life, doc. I have enough of it!”

I realized, taking too much stress on how I would physically look such as with or without my long and straight hair is just a waste of energy. It is just a physical appearance, too superficial compared with what I am actually going through, the overall pain and troubles of having autoimmune diseases.

If we can do something to eliminate some minor stresses, perhaps we can push away future nuisances that go with our diseases. We just have to beam a smile and remember that the optimism of our soul, even in our sufferings, is more important than what the eyes can see.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Stanislav Hubkin

Originally published: April 24, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home