The following post entitled “Facing the reality of scleroderma brings up difficult emotions” was written by Amy Gietzen for Scleroderma News.*
She writes;
“A year is a long time to feel hopeless. Throughout my life, I have endured. I’ve taken my licks and kept moving in a positive direction. Even after I was diagnosed with scleroderma at the young age of 19, I remained blindly optimistic, no matter the potential outcome of my disease. Sometimes, though, this optimism came at the expense of my emotional well-being.
Lately, I’ve seen a change in myself. I’ve kept hope alive for so long, believing that if I fight long and hard enough, I’ll make it through anything. But the health challenges I’ve faced over the past few months have opened my eyes to the reality of my situation. No matter how many positive vibes I project or how strong my will to live is, scleroderma will eventually consume my body and end my life. There isn’t a single thing I can do to prevent the inevitable.
I used to think that at some point, my disease would get sick and tired of pestering me and go away, or at the very least become dormant. I was convinced of that for so long. Now, 22 years after my diagnosis, I see why that mindset was naive.
Living in the present
Facing the reality that scleroderma will take my life at some point has instilled in me the need to be present for every experience. If death is the ultimate endgame, then I get to
decide how I’ll enter the pearly gates.
As this disease has slowly consumed my ability to function independently, I’ve thought a lot about what my life will look like moving forward. In the end, I came to the conclusion that I wanted to fight, go out swinging for the fences, and make every single breathable moment memorable. I’d take mental snapshots of every experience so I’d never forget it. I wanted to be able to come back to those memories at any time, knowing I experienced life in its totality.
For years, the snapshot idea worked, and it got me through some pretty dark and heinous times. Lately, though, nothing I do seems to give me peace. I’m constantly battling my body and mind. At first, I thought it was depression, but as time went on, I realized it wasn’t. I knew deep down that all of the emotions I’d bottled up during my 22 years with scleroderma were bubbling to the surface, and this time, no amount of seeing the bright side or making memories could hold them at bay.
Being honest about my reality
I feel lost and consumed with anger at the direction my life has taken, but because I’ve always maintained a positive outlook, I can’t seem to shake the hope that there’s light at the end of my tunnel.
So which feelings are appropriate?
No one really knows. Just as I can’t tell other people living with an illness how to think or feel, they can’t advise me in the same respect.
I think the best way to push through is to be honest about how you feel and where you’re at in your disease journey.
There’s no right or wrong way to handle the toll of scleroderma. All anyone can do is try to be open with their feelings. For me, taking each day as it comes helps me not to feel so overwhelmed or bogged down by the emotional weight of my physical deficits. Focusing on the day at hand helps me battle unwanted feelings of hopelessness. As for today, it’s the best I can do, and I’m at peace with that — for now.
Amy Gietzen resides in Buffalo, New York, with her amazingly supportive family, friends, and three cats. She’s a patient advocate, the creator of the young adult virtual support group SYNC, and a public speaker who travels across the United States educating students and medical professionals about scleroderma.
Amy was diagnosed with systemic scleroderma in 2001 at 19 years old. She’s also developed idiopathic pulmonary fibrosis, pulmonary hypertension, and major heart rhythm issues.
* Scleroderma News is a digital platform intended to provide the scleroderma community with the most recent news and information on the disease, as well as first-hand community perspectives from their patient and caregiver columnists.
Blessings ’til next time 🙂
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