How Pain Has Manifested in My Life With Scleroderma
When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of.
As time passed and I slowly grew into my new identity, pain snuck up on me in other ways. That four-letter word has taken on new meanings for me over the years.
One source of pain has been the rigorous process of searching for the right cocktail of treatments to slow my disease progression. Scleroderma can be pretty fickle in terms of how it responds to medications, so this has been tricky. I’ve swallowed hundreds of pills, undergone test after test, and had my blood drawn countless times. I’ve been admitted to the hospital for days on end and undergone surgeries and procedures that left physical, spiritual, and mental scars.
The treatments have caused side effects, such as constant fatigue and difficulty breathing, that affect both my physical and mental health. And while some have helped me combat my scleroderma symptoms, I’ve never achieved remission.
After working so hard to manage my symptoms and live a balanced life, hitting a brick wall in my efforts to slow or stop progression causes me emotional pain and affects my will to keep fighting. I used to wake up every day praying to live pain-free, but that wish can only be rejected so many times. Every time doctors tell me that another treatment plan has been unsuccessful, I sink further into a depressed state. My disease instability has taught me that good doesn’t always conquer evil.
Over the years, pain has made me question many aspects of my life — even the purpose of my existence. It has been especially challenging to appear perfectly healthy, even when I’m slowly dying on the inside. The stigmas associated with invisible illness hurt me deep down in my soul.
Some assume that I share my journey for attention, and that opinion can lead me down a rabbit hole of destruction. But I’m not describing how I’ve endured scleroderma to brag or pat myself on the back. I want readers to understand the devastation and pain that scleroderma has inflicted on my life. My journey with this disease hasn’t been cut and dried. I’ve often had to get creative about treating stubborn wounds, both physical and emotional.
But as I look back on the past two decades, I find that I’ve not only survived, but thrived through pain. Throughout my battle, I have stood with my head held high. My strength has come from my willingness to share my truth. Using my voice is one way I process my trauma.
By speaking out about my pain, I’ve been able to challenge stereotypes that young adults can’t be disabled and that scleroderma only affects older people. I have overcome adversity to become a voice for the scleroderma community.
So the next time you meet someone who appears healthy or happy, remember that pain can manifest in different ways for everyone. Other people’s journeys aren’t for us to judge; all we can do is bear witness and try to empathize.
It’s important to always be kind and recognize that unless we’ve walked a mile in someone else’s shoes, we have no idea what their daily life is like.
Note: Scleroderma 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 Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Naomi Lakritz
Lovely, insightful column, Amy. I enjoy all your posts, but this one was especially beautiful and articulate.
Meri Logan
Everyday I think that if only the weather would change maybe that would make me feel better. The weather change but it may be only for a day when temp goes up to 90 + degrees. I thought that being the most outgoing and taking care of my other family members would keep me busy enough that I wouldn't have to be lonesome or bored. Now my mother and my brother has passed and I have no one worse than me. After having a girlfriend that seemed to understand the excelleration of this disease I took it for granted one day that I could go through with her with my pain , my plan to get upstate to get treatment at Cleveland Scleroderma Clinic. The thought of getting on a plane full of people coughing with no masks is very devistating to me and I'm thinking all I need is Covid right now to go with this pain I feel I could die for sure. But as I made plans one day I guess maybe I forgot to asked girlfriend how her asthma was coming along and she laid it on me....how all I wanted to talk about was my Scleroderma and how everyone has something that hurts... and how she was extremely tired of me talking about my illness...she slammed the phone in my ear... or should I say disconnect....not to get another call from her even though she was the one that started the "wellness check" between us if we hadn't heard from each in a few days after her asthma was much worse than my Sclero but then got better. Some days the pain is so bad I do have to go beyond the regular dose of oxy and then I cry, for fear I will be come addicted to them or worse my kidneys fail from too much of drug. So where is the end of the rainbow for the ones who give their all to keep everyone around them happy. I'm not a paranoid person but my husband seems to treat me just civil enough to keep me o.k. until I die. I ask him to fix and add things around the house and he replies, "Oh I'll do that in a few years after I get the house paid off". Might as well wait and do it all at the same time. O.K...and what am I suppose to enjoy looking at until I'm gone? Oh... It'll all fade away just like a vacation together and the new sauna for my aches and pains. What do you think?
Dinah Watkins
Another great and thoughtful article Amy, I can definitely relate. Keep it up!
Amy Gietzen
Thank you Dinah your encouragement means a lot!
Jerry Lee
Amy thank you for your courage and strength. it helps me understand what my significant other is going through.i pray Yahweh keeps you in his peace and stringth to continue doing what you have been called to do for so many others.
Ilene Wax
Love your words and love you!
Amy Gietzen
Thank you Ilene love you back
Anita
Meri--you're in a very, very tough time. I find that sometimes it's also very tough to do self-care. I find that making myself take a day off from my "to-do's," no matter how low energy they are, gives me some stamina. Also having a quiet day to yourself to read or watch a favorite TV series, without others around, if that's doable, is good. Calling an old sympathetic friend helps. Or perhaps a professional counselor. You are not alone and should be praised for your stamina and courage. Our hearts and prayers are with you.
Anita
Meri, you're in a very, very tough time, Thank you for sharing your pain with our scleroderma community, and know that our blessings and hugs are with you.
Pamela Stower
I am 64 now and have had scleroderma for almost 30 years. I also have idiopathic pulmonary disease now also and my numbers are rising on pulmonary hypertension. My hands now are aching now and hard to open! I have lost 5 ofmyfinger to top knuckle due to raynauds. I have good days but a lot of my days are worsening. Slowly I feel it strangling physically and mentally. Chronic pain can put you in deep depression. I have days I do nothing and days I push myself to take care of the pool and pond and home. Luckily I have a loving husband. I would love to receive news from you. Please let me know how I can stay in touch. Shalom ~~~~~~
Dawn Trykowski
1 week until 60 and25 years with sd.I am divorced now and living with my mom. Trying not to be less than I know I am. Pain is more than body pain 💔 is also spiritual, emotional and guilt. Others can be in pain too. Those who are because of how much love and care of you. Sadly, I'm losing so much and I'm sorry that it has taken me awhile 😔 to get forgiveness from the person I now am..we are all in this situation together ❤ 😢. Thanks to all who are doing this for us.