Know Scleroderma: A Life’s Journey
June is Scleroderma Awareness Month and I have spent the last few weeks debating how to write about it because until recently, telling the world that I have been living with scleroderma was not something I did.
Publicly or privately, I spent a lifetime avoiding the topic.
In my professional life, I felt admitting it could hurt my career and in my private life I always wanted people to see me. Not me through the lens of being a person who is chronically ill, but the me who loves family, fun, food, travel, books, and a lot of other things.
I recognize that the ability to hide and manage my illness out of sight to others is a privilege many do not have, but the key word here is “manage” because it has taken a lot of work and planning to do this for decades.
I was also unsure of how to even begin explaining my journey.
How do you discuss something that irrevocably altered your life, a condition you worked to assiduously hide for decades while trying to live a “normal” life? What do you say about the amount of emotional capital you have expended dealing with an illness that stubbornly refuses to leave your body and mind at peace? How do I write about my experiences of living a lifetime with scleroderma without people feeling sorry for me because the truth is that the last thing I would ever want, as I never feel sorry for myself?
I do not feel sorry for or badly for myself, I never have. But that does not mean that I have had an easy go of it.
What the world does not realize is that as much as I have seemingly been living with scleroderma quietly, I have been actively combating it for decades. We are locked in a fierce, vicious battle that I will fight until my body cannot fight any longer. I am stubborn, I am determined, and I am hopeful, but I also know that none of these is always enough.
I fight it with everything at my disposal, from prayer to exercise, to altering my lifestyle, whether it is eating, sleeping, or exercising to maintain my mobility and practicing mindfulness to make my days a little bit easier.
Living with and managing a chronic illness takes a lot of time, energy, thought, planning, and more patience than I often have inside me.
I admit that I have days where I feel over it and too tired to deal with any aspect of my illness. Days when I do not want to even hear the word “scleroderma” and I wish to just go about my day as someone who does not have to overthink the mundane to get through.
I don’t want to worry about how many low-residue, “soft-food” meals I need to consume in a week, so my digestive system does not rebel and cause me difficulties. I don’t want to think about putting on my oven mitts before I reach into my freezer. I don’t want to apply 101 oils and creams just so my skin doesn’t get chaffed by my waistbands, which are already super soft out of necessity, yet still sometimes painfully bothersome.
Yes, part of this experience involves what I would term “battle fatigue” and no, it is not always welcome.
Some days I simply do not want to deal with any aspect of being ill. I would rather hide in my home and just not think one bit about any practical aspect of living with scleroderma. After over forty years of living with this illness, I get worn.
But even with that, my attitude towards it is, in all honesty, multi-faceted, much like my disease. I have days and moments where I am relentlessly proud of myself for living with scleroderma for so long and others where I wish it would just stop and go away.
I also realize that while I may be tempted to hide inside and bury my head, I couldn’t stand it beyond a day or two. It would drive me crazy and likely have the opposite impact of the blissful relief I imagine.
As much as a lifetime wrestling with the various symptoms and additional conditions that come along with scleroderma can be exhausting, the truth is that I now see good in it. I now know that by sharing my experiences I can help others.
And by helping others, I am helping myself.
A few years ago, I pushed myself to do it scared, to stand up and tell others that I am disfigured. That I deal with significant visual challenges. That I grapple with soreness, stiffness, fatigue, and the simple act of eating is often a challenge. My body is different and things you may take for granted, I must think, rethink, and re-re-think again.
None of this is easy to share. I inwardly cringe at speaking up and sharing my story every time I sit down to write. I am more of an introvert than people realize, so this is incredibly difficult for me. I am wincing a tad even while writing this article, but I simply refuse to give in to those fears and doubts.
In the process of putting myself out there sharing and opening myself to others, I found my voice. I found a greater purpose. I found friendship and community.
Perhaps I even found a bit of myself that I had thought was gone for good.
The girl with enormous dreams that were derailed by a terrible diagnosis and an illness that would not stop spreading. And, because so much of my skin is affected (roughly 65%), I watch as it spreads, limb by limb. I do not believe I can adequately put into words how excruciating that has been.
Yet the truth is that even during the most difficult moments, I never gave up hope.
I refused to believe that I was incapable of accomplishing things I wanted to do. I simply learned I needed to take the circuitous route to achieve my goals, but that makes those victories much more meaningful.
While I am not thrilled about living with scleroderma, I think dealing with this illness has taught me so many lessons I am glad I did not miss. Little, everyday joys matter to your soul. Appreciating the seemingly average moments of your life adds meaning to them. And, regardless of who you are, you genuinely matter. Your life has multiple purposes and destinies for you to fulfill. Do not be frightened to pursue and fulfill your dreams as they are waiting for you. And if, for whatever reason, they do not work, create new dreams and forge ahead.
In honor of Scleroderma Awareness Month, I want to tell you that I appreciate your support on my journey. I am grateful for this space, and you for taking the time to read, share, and understand this illness. I sometimes wonder what my life would be had I not been ill, but then I realize that this illness is so much a part of me that I don’t even know what that would look like.
Perhaps that is the point: I was created to be scarred, different, and to endure. And to share honesty, hope, and inspiration. I am just thankful I have been able to do so with grace, dignity, and yes, even gratitude.
That’s my scleroderma journey.
If you know anyone who may be living with scleroderma, contact the National Scleroderma Foundation for support, resources, and information. As a member of the Advisory Committee of the Rocky Mountain Chapter of the Foundation, you are welcome to contact me.