Facing the reality of scleroderma brings up difficult emotions
A columnist's positive outlook is challenged by her disease progression
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.
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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Dinah Watkins
Another great article Amy! Absolutely can relate.
Amy Gietzen
Thank you Dinah -
Jan Ames
I’m sorry you are having to deal with these feelings . You’ve had the disease longer than I and I’m 74 so you’ve had to deal with this at such a younger age . You have been positive and that is wonderful for I find myself angry which doesn’t help . I’m also scared not knowing what will get me in the end even though I’ve always wanted to know !Now when I cough it’s like oh it’s my lungs are going ! I just pray that these fears will stop and I just accept this is my life . I pray you have support and believe in a higher being that can bring you peace and comfort.
Chip Gagnier
You may want to look into a drug called Opsumit for the pulmonary hypertension. I have had pulmonary hypertension for 11 years and it has been a wonder drug for me. I have also had scleroderma for 34 years and have tried several drugs for it and to date have had no improvement. I am to the point where they are going to replace the joints in three of my fingers to alleviate the pain. Those of us with scleroderma know that it will eventually get us if it is not something else. Fortunately I can still live normally with the exception of my hand. I wish Amy luck. Anything I may be able to do to help I am here 24/7.
LS
Amy, I appreciate your honesty and sharing the reality of confronting this crazy and very individualized disease. 20+ years of this disease causes me to have emotional and mental ups and downs on top of all the physical challenges. I’m currently with you in the phases of hopelessness. Not easy for family to hear, so my psychotherapist is important for me to talk to. Sending you understanding and support across the web.
Terri
Thank you for sharing. I have a sister struggling and don't know the right things to say. I am giving her space but She has become very distant from me and it hurts not being in her life. I appreciate any feedback or suggestions. Sending love and support to you and your family.
Amy Gietzen
I am sorry to hear about your sister. I would be there for her, even if she doesn't reach out at first having you there is the support she needs. She might want to open up but may not know how. Try to ask her question, go to the doctor with her just be a shoulder for her when shes ready.
Vivian Evans
I am having lots of pain in my back and shoulder and my knee. All on the right side, I have been going to physical therapy but it does no good or makes it worse, especially in the water. Is my scloderma part or all of my problem. I am 76 and my scloderma was diagnosed from my skin when i was about 47. I have had cortizone shots in the past. Today I just hurt, don't want to use my arm and my knee and back huurt when i walk. Sorry to be such a cry baby..
Amy Gietzen
I am so sorry to hear your in pain- I would try to discuss this with your doctor and see if there are other options to help you hurt less.
LLK
I am right there with you Amy. You have been an inspiration to myself and so many others and through your hurt and doubts you have always been a true cheerleader. Please content to fight the deamons of Scleraderma. We all need you.
Amy Gietzen
thank you so much hearing that my words help inspire others really touches me.
Amanda
I knew I'd cry reading this one. It's so unfair and does make me angry and robbed. But I know that none of us are guaranteed anything and pick back up my resolve and take hold of whatever control I can of my life. I'm so lucky to have a few very supportive family members who've let me cry on their shoulder, my husband being my main supporter.