Why I Tell People I’m OK, Even When I’m Far From It
Columnist Amy Gietzen isn't always honest about her scleroderma symptoms
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable.
But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times I’ve plastered a smile on my face and pretended everything was fine when, in reality, I felt far from OK.
Why do I do that? Why do I feel the need to put on a brave face and ignore what’s happening in my body and mind? Why is it more comfortable to lie instead of owning my truth — the painful, the stressful, and the miserable?
Lying to doctors
I discovered early on in my diagnosis that no medication or treatment could alleviate my symptoms completely. On good days, some of the pain and discomfort subsided, but on the worst days, the treatments would barely touch the physical discomfort traveling up and down my body.
I’d leave appointments so disappointed not to have a permanent solution to my ulcerated sores or itchy skin. Over time, I built up armor to shield me from the letdowns until I eventually became emotionally numb to the physical pain.
It seemed pointless to be honest with my doctors. Looking them in the eye and telling a baldfaced lie about how I felt quickly became second nature.
Lying to loved ones
Throughout my life, I’ve always been a glass-half-full kind of person. Not one to let my emotions overtake my resolve, I began to tell everyone who asked that I was “good” or “fine” and that there was nothing to worry about.
Did I actually feel that way? Hell, no! But I chose not to disclose the truth. After all, there wasn’t a tactical solution for my angst, so why worry my loved ones?
A new perspective
Despite my positive facade, internally, I felt suffocated with frustration. I was sick of being told that my symptoms were typical of scleroderma and that there were limited options for relief. Why was I going along with doctors and medical regimens if we weren’t sure we could fix the problem? What was the point of it all?
I carried on for quite some time with false bravado. Every day I’d paint on a mask of pleasantries, showing the world that life was A-OK — nothing could turn my smile upside down. Still, those closest to me could see the tiny cracks under the surface.
Feeling as if I had limited options, I stuck with my medical team as they worked diligently to help me find relief. After months of physical discomfort and emotional distress, my body finally started to respond to a treatment plan. I still wasn’t symptom-free, but by working with my team and educating myself throughout the process, I discovered which practices worked best to alleviate my discomfort.
I’ve come to the conclusion that I’ll never truly be free of pain or symptoms; it just isn’t possible for me with scleroderma. But thanks to my commitment to my care and my medical team’s perseverance, I’m now able to enjoy daily life.
Are there still days when I fake a smile and tell people I’m doing great? Of course — I think there always will be. No one feels amazing all the time, especially someone living with scleroderma.
But I’ve learned that it’s OK not to be OK. It’s perfectly reasonable to feel uncomfortable, stressed, or just plain crappy with this disease.
And I’m learning that I can tell the truth about how I feel. The people who love me will understand and care about me, no matter what.
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.
I am sure most of us can relate Amy. I know I certainly can. I also feel causing others, like my direct love ones to feel sympathy or angst for me is not helpful to them, so I am okay is best, most times. Also, how we feel changes or can change so quickly. I wish you well, you also share such enlightening, honest comments with us.
Hi — I know the feeling. But I also believe in the power of the mind. I don’t see this as a fake lie, more as a mind conditioning weapon. Stay positive and adaptive to your reality, let go of all emotions and frustration, and you should see positive impacts. This is in addition to all other medical treatments, anti-inflammatory diet, daily exercises, meditation and deep fascia stretching to break down the scarring tissues. And yes, doing all these things require significant energy, focus, discipline and commitment. Be brave and indulgent.
Sedrick I Pace
I always enjoy reading your columns. I’ve had Scleroderma for 40 years now… I maybe the oldest black man with the disease. I had many stories that your reader would relate to.
Hi, I too paint on a smile and hide the all consuming exhaustion, the feeling of every bone in my body is broken, my muscles aching and feel like my legs are so weak, they cannot hold me up, or take another step.
People don't want to hear how you feel really, and I don't want to admit to either them or myself how I am, as I feel I'm admitting defeat.
My Gp says it's just your scleroderma getting worse, that left me totally upset. I had an appointment with my consultant, I asked a couple of questions as I was getting scared, he looked at me and said if I tell you anything you yourself will be a doctor.! I'm totally unsupported and has made me not want to go to get help or see my Rheumatologist ever again. This is why I don't admit my pain, depression, etc... I am 58 and feel my life is over.
I will carry on with a painted smile, and like another comment, I too am a woman who's glass is always half full, but it's difficult and I won't give in to scleroderma.
I am so sorry you are feeling so unsupported! It does take time to access your emotions before you can let others help you. As far as your doctors and feeling overlooked, I would try to find a doctor that you click with. Not every doctor will jive with you and vice versa and it is perfectly acceptable to find one that you feel you connect with.
Well said Amy! You’re absolutely right, the people who love and care about you understand no matter what. Some days I get bummed out but am grateful for all that I have and what I don’t. Keep on being an inspiration!
Thank you, Dinah, you are such a great writer I am honored that you find my column inspiring.
Good Morning Amy, I'm less than one year into my systemic sclerosis scleroderma journey. I read every one of your posts that come to my email. Yes, I agree, I doubt that any of us are fully honest about what is going on in our bodies and minds, even with our loved ones in order not to cause them additional stress. I was frustrated with the lack of time from my rheumatologist and obsession with pills to supposedly treat the symptoms. Surprised to find many Ted Talks discussing autoimmune disease and flabbergasted that at finding a complete lack of dietary, exercise or self-care guidance from the regular doctors. It wasn't until the discussion with a supportive yoga instructor that I learned the word "fascia". Amazed at the specific care being offered by some alternative providers and it has made a world of difference. So much so, that the rheumatologist knows I'm not taking any of the items she prescribed and she knows the protocols I've been following and she said "you are looking much better, keep doing what your doing"!
I sincerely appreciate having insight into your experiences. Thank YOU.
I am so sorry to hear you too have joined to not so lucky club of scleroderma patients. I am so honored that you find my deep dive into my life beneficial for your medical journey. I think we all find different ways to deal with our bodies and I can not tell you how many times I have used tips or tricks from nonmedical people to help with symptoms of dry skin or itchyness.
Such a wonderful article Amy! I could not of said it better. I sometimes feel so guilty when I feel like crap. But I have come to realize that I can not always be a "Sunny Day Beach Feeling Girl" when asked how I feel.. After all I know myself better than those around me.. My husband is my hero because he knows what I go through with this disease.
Michele, Thank you so much and I am so glad you have your hubby.