Losing My Independence Due to Scleroderma Has Been Challenging
I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury.
Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a party trick. I wake up and go to bed living and breathing in a body that is slowly dying.
Scleroderma comes with baggage. I am living with a disease that affects multiple organs of my body. My scleroderma symptoms can flare up at any moment, seemingly without cause.
While learning to grow as a person with scleroderma, I had to accept that there are things I can and can’t physically accomplish. I went from being an active 19-year-old who swam, danced, and went to the gym three times a week to having a hard time walking up a flight of stairs.
These last few years, my physical deficits have become more noticeable and less manageable. I suffered a flare-up during the height of the COVID-19 pandemic a couple years ago. While working my way back to my old self, I noticed that my body wasn’t cooperating. I was out of breath more often than I’d ever been, and my strength and stamina were considerably less than in previous years. I didn’t understand how I could go from having so much energy to feeling like I needed a nap.
My doctors ran tests and found that my heart had stiffened, which prevented it from functioning at full capacity. I also had developed hypertension.
Discovering that my heart was literally broken wasn’t so bad. What hurt the most was that I now needed to depend on people to help me with things I previously could do on my own. Little by little, my parents began to help me with more and more things. I had a hard time making my bed, so they helped. I could no longer walk to appointments due to shortness of breath, so my parents bought me a wheelchair. I would get lightheaded and out of breath in the shower, so my dad installed railings and grab bars.
Over time, I started to notice my independence fading away. Feeling like I’m my own person is extremely important to me. Both helping others and doing things for myself are concepts that were ingrained in my DNA from birth. One of the biggest examples of this is enrolling in nursing school after I graduated high school. For many years, I learned to be positive, embrace change, and accept my life — scleroderma and all.
Now the foreign concept of losing my independence and relying on others was causing me to struggle. I couldn’t imagine my life without my independent identity.
It has been years since I had to bring on support to help me with daily tasks, yet there are still days when I struggle to ask for help. Sometimes I refuse and end up doing too much. In dealing with either scenario, I suffer the consequences. I am either exhausted and in pain or angry at myself for being unkind to those helping me.
I am still working on ways to live independently while also leaning on others for help when needed. It is a concept I will embrace, but it’s taking a little longer than I would like.
The takeaway from this is that I know that I can’t change what is happening to me. I know scleroderma will never go away, but it will make me a stronger person in the end. Of everything I’ve lived through — finger amputations, lung fibrosis, and body stiffness — losing my independence is by far the hardest. But in the end, my time on this earth means more to me than my pride.
So I will overcome this just as I have everything else. Step one is to fully embrace my family’s support.
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.
About the Author
Diane Doueihi
I totally understand with everything you have said, it's so very confronting having to ask & receive help. Im still working on that aspect.
Is your story able to be shared online? Thanks for voicing what many are dealing with
Margie Nerone
I cannot begin to tell you how much I appreciate all you share about your journey. It is so helpful in my journey.
Thank you,
Margie
Teri McFall
Hi Amy, I just want you to know that I have been reading your columns and this time I need to say something.
How dare these people give you a hard time about how you feel and what you have said.
Your columns are the only thing that has been keeping me going. I was diagnosed in 2019. I had symptoms way before that. It took a while for the Scleroderma to have a positive test. It was the diffuse Scleroderma. The not so much fun one
I also, have a stiff heart. You are short of breath, have pain in joints and muscles, and your veins feel like they are popping. If it was not for you this disease would not be as well know as it is. I am very sorry that you had to get this at
age 19. You deserve to be known and well known. Thanks for everything you say and don't stop writing for those of us who listen. God be with you, Teri
Tim Harley
I'd like to share something with you that came to me early in this particular relapse (about 7 months so far) back when I was observing Lent this year. In an effort to better understand the passion and to subsequently experience that connection on a very spiritual level, I thought that my understanding of things might come on some esoteric, philosophical level. However, I've learned this year that God more often than not reveals His truths to us in the very physical world, in the way we live, love, rejoice, mourn and suffer. Spiritual enlightenment via physical actualization.
Lenten is not something I'd ever felt compelled to observe, but this year, it was heavy on my heart and I sought counsel of those within the communities that do observe it regularly. The journey wasn't what I'd expected, but as is usually true with all things God related, it was what I needed and I am still dealing with the repercussions of what I was shown. In some more orthodox denominations, Lenten is observed along with practicing the Stations of the Cross, whish is a series of paintings or sculptures that reflect Christ's passion from Gethsemane to Golgotha. They provide a way for the practitioner to commune or associate with the Passion and to meditate and reflect on each station as it reveals something of the character of Christ and how He handled each portion of the journey and how it can apply to our lives. It was during this time of study for me that I had also began the current process of neurological and rheumatological testing that would hopefully shed further light on the issues I deal with. I had prayed a very specific prayer for an answer that could not be refuted. It was within a week that I received my first positive SCL-70 ANA test.
In a series of reflections from a Franciscan Order, I was drawn to these excerpts from these particular stations:
Station 2: (Jesus made to carry the Cross):
"My cross did not come only from Pilate or from the Roman soldiers. Ultimately, my cross came when I took on my Father’s work and became human. Your crosses are much the same. They are your credentials for being human. The question is not whether life brings crosses, but rather your response to them.
I embraced my humanity. You must embrace your humanity. Resisting crosses leads to self-hatred, hatred of others, and bitterness. Some woods are stronger than steel because they bend. Learn to bend. Learn the wisdom of triumphing through your crosses rather than in spite of them."
Station 9 (Jesus falls a 3rd time):
"You may someday fall for a third time and have no strength to get up. You will have to be picked up by others. Don’t let that lead to despair; it does not mean you are less than human. Do not let the reaction of those around you work to take away your dignity when you are flat on the ground and helpless. Despite their best intentions, others probably will be showing a mixture of pity, shock, disgust, and anxiety at the sight of your helplessness.
“What good am I to anyone?” you may wonder as others pick you up. But if you bear your weakness with love, you are doing wonders for yourself, as well as the whole of creation. You are making yourself like me on my cross. You are transforming the very fiber of life."
And while there is much I would like to touch on, for the sake of the relation to your post, it occurred to me how true these admonitions are. Amy, we do not get to choose our crosses. But we do get to choose how we bear them. And, when the times comes, as it must for all humans, that we fall under the weight of our crosses, the true dignity of the One in whose image we are created can be and is displayed in how we accept the hand of others that reach out to us; in how we allow them to show the mercy Christ showed Peter when he reached down to pull him out as he sank in the storm, or when he bent down and wrote in the sand and graciously lifted the adulteress out of despair and into life and rebirth.
My friend, do not despise the work that is being accomplished in you through the cross you currently bear. The light and beauty you bear is apparent to all who read in the posts you share here in your journey.
As I sit here and type this, my tears well as I consider all you've been through and even what may await me. But the tears are also those of joy, because I know with my entire being, that this is temporal. And in the great restoration, we will look back and see the true beauty that has been woven into the great celestial tapestry from the individual strands of our lives. And there is no greater beauty than a life lived well, especially in the midst of things we can't fully comprehend.
My apologies for 'preaching'. But here is my heart.
Peace, this day.