It’s a Little More Complicated Than ‘Age Is Just a Number’

It’s a Little More Complicated Than ‘Age Is Just a Number’

“You’re only as old as you feel,” as the saying goes. Unfortunately, since being diagnosed in 2001 with granulomatosis with polyangiitis at age 19, I’ve always felt older than I actually am.

My first experience with that feeling was at diagnosis. The doctor who diagnosed me after a five-day hospital stay in which I nearly died told me it was rare for someone my age to have this condition. He told me that people usually were diagnosed at least in their 60s.

The feeling hit again every time I had to go to the rheumatologist. While in the waiting room, I usually was the youngest one there. I would notice other people looking at me, likely assuming I was waiting for someone, and then appearing confused when I was called into the back.

My mom often accompanied me, and other people clearly assumed I was there for her. She would talk to the others in the waiting room after I was called back. Sometimes they told her how shocked they were to see such a young person as a patient.

Being in the patient room didn’t help, either. The walls were always plastered with charts and medication ads aimed at seniors.

In addition to all of that, due to this life-altering and potentially deadly condition, I had to grow up mentally. Although I was in denial about everything for a long time, deep down I still knew I had to try to be smart about what I did.

I never felt that I got to experience my 20s like other people do. At 25, I was having pain in my knees, and my doctor diagnosed me with arthritis. That was 13 years ago, and it has only gotten worse. Now, I am also showing signs of rheumatoid arthritis in my hands.

Then my 30s hit. And while I’m now fairly used to this condition, it still manages to surprise me with new symptoms.

In my early 30s, I started going through menopause. It took years to find a doctor who didn’t respond to my concerns with, “You’re too young.” Even after telling them that I used to be on Cytoxan (cyclophosphamide), an immunosuppressive drug, and about my family’s extensive medical history with early menopause, they all declared that I was too young.

In 2017, I experienced my first bout of hair loss. A hair stylist asked me, “Is it normal for you to have this much hair come out?” I said yes, but the answer really was no.

That’s when I learned all about hair loss. I asked my doctor about it, and he told me it’s likely from the methotrexate I’m taking, in addition to anxiety. The anxiety part made sense, as the previous year, I lost my dad to cancer, and I lived in an area that recently had been hit by a major hurricane. The doctor recommended I take biotin, which I now do, and I use a shampoo with biotin and an anti-breakage conditioner.

All of that helps, but I still go through cycles of hair loss, which make me feel old every time. I’m in my 30s, and my hair is falling out. It’s also going gray, but I’ll take gray over bald any day.

When I add up all of these symptoms, “You’re only as old as you feel” just makes me sad. I am 38 and feel 100. So, I am working on focusing on my life instead of my age. After all, as another saying goes, “Age is just a number.”

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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

3 comments

  1. Denise Humphrey says:

    I understand the authors point of aging quickly. I was diagnosed With GPA at age 60. Within 6 mos I felt like I aged 20 years with all the complications of my disease. This article validates that sense of losing part of your life.
    .

    • Bonnie Schaefer says:

      I can totally relate. I was diagnosed at 64. Today is my 68th birthday and I feel like I’m in my 90s and look much older than I am. I’m guess I’m lucky to be alive.

  2. Chris says:

    I could not relate more! I was a sick infant, child, teen and young adult. Always missing school, work, holidays even! because I was too weak and often had (a chest cold) WG flares. I was undiagnosed until the age of 34, but my docs all assume I had it for years and was a smolderer (I had a form where it didn’t pop up suddenly and leave me in ICU). At 34 I had fought so long with Wg that I was completely disabled by the time I was dx. I lost my life in 2005. I had to sell my home I worked so hard to buy (it even had a pool!!!!!!! I was so proud of myself), I had to leave my classroom (God, it still hurts. I was my career and I loved it so much), I lost most of my friends, even a couple family members, I lost my dignity, freedom, and lost the chance at a family of my own. Instead, I had to move in with my parents. I felt like I was 100 years old physically, but a 16 year old again living with my parents. We all have so many heartbreaking stories, but at least we’re here to tell about them. Just remember that no matter how down you feel, hang on for tomorrow. Tomorrow will be better.

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