It was the third day in the Intensive Care Unit following my lung biopsy. I was sitting up in the bed, rocking all of my tubes but finally off the high flow machine, drinking a Starbucks latte and chatting with a visitor. The nurse came in the door and stopped short, taking in the scene of me, the Starbucks, and my visitor. “I don’t believe it!” she exclaimed. “They just told me all the things that are wrong with you, and I walked in here expecting to see a gravely ill person. Instead… here you are! Not what I expected!”
“Yeah, I get that all the time,” I told her. It’s the curse of chronic illnesses… you adjust and stop acting sick. Your condition is invisible, and it is too exhausting to explain to people what’s wrong when the list of diagnosed conditions is… well… exhausting. Seriously, if you say more than a couple of things it starts to sound like you’re just making things up. It doesn’t help when the diagnoses sound fake to begin with (systemic sclerosis associated interstitial lung disease… it’s called SSc-ILD for short, but still… sounds like something invented in a science fiction novel, right?). It invariably gets worse if people start to share back some rheumatic or autoimmune conditions that they know of (like fibromyalgia or Raynaud’s), and you are compelled to say… “Oh, I have that too…” See what I mean? Attention-seeking hypochondriac is sure to cross their minds. I mean, I would wonder that… It is much easier to cover up as much as you can and act normal.
I’ve been thinking about this a lot. Several patients in the support groups that I belong to have been struggling with family and friends who are unable/unwilling to accept the diagnosis. They don’t want to hear about it, they don’t want their lives to change, and there is no support. There has been heartbreak and tears, to be frank. Others in the groups have shared that their families also refuse to accept the seriousness of their condition(s) because there have been years of struggle to obtain the diagnosis, and after so many doctors have said that it’s all in your head, or, you need to control stress better, they kind of believe that. From the perspective of these family members, their scleroderma family member is just trying to milk the diagnosis for attention. To make it worse, some patients (and this is exhausting, believe me) start to list all of their symptoms as if to justify their diagnosis. It is a little desperate, and more than a little heartbreaking.
Then there is the more insidious problem: what did you do to make this happen? I have been asked that, and it usually is followed by advice about things that I can do to control my scleroderma and the resulting lung/heart complications or even how to make myself get well. The implication is, if you don’t do this (herbal treatment, sunshine, exercise, wacky stem cell injection), it is your own fault that you are sick!! It happens to a lot of us. It eats away at self-confidence, and makes me, and other patients question just how sick they really are.
I, and a lot of others in my extended scleroderma community, feel like fakes a lot of the time. Like, almost all the time!
I mentioned that to my pulmonologist last week on the phone, and he was really direct in his response: do not fall prey to imposter syndrome!!! This is really happening to you, you are dealing with it very well, but you need to remember to take care of yourself!
I had never thought of imposter syndrome in this way, but I think that his point is well made. Maybe I should have a poster made with this written on it. With some sunflowers and a tuxedo cat for interest. Every person diagnosed with a serious chronic condition needs this, because it is easy to just trick yourself into pretending that you are “better” and then the bad decisions get made. Like going off your meds. Or partying like it is 1999. Or eating all of those things that are essentially forbidden at once! There has been a rash of wailing patients in my online support groups who say things like… I went off my meds and started treating myself with natural remedies, and now [insert new symptom that has them terrified] is happening. Yep. That is imposter syndrome, hard at work. No wonder my doctor was so firm with me.
Because the point that he was making is that I am pretty ill, and I need to own it. I’m in a very small group of scleroderma patients who have the full battery of the more serious systemic sclerosis complications: pulmonary hypertension, interstitial lung disease, and diastolic dysfunction. I am being treated aggressively for those conditions, and I am doing really well, but they haven’t gone away.
I finally pulled myself together to check what the survival rates are for patients with two of my concurrent conditions (SSc-ILD-PH) and discovered that there are recent studies that looked at patients being treated with the same drugs that I am on.
- This study, done in 2009 with patients on the same drug regimen as mine, showed the 3-year survival rate to be 39%. Oh, oh. Not an imposter any more.
- This study, published in 2011 has a 3-year survival rate of 47%. Oh. That’s better.
- A huge study done in Germany and published this year, shows that scleroderma patients with ILD-PH had the worst outcomes: the 5-year survival rate was 79%. Gosh, that is a good-looking number!
I see a trend. Do you see a trend? It looks like things are getting better and that survival rates are going up. I have to admit, when I saw that first 39% I almost panicked and stopped searching, because… I was diagnosed and started treatment for pulmonary hypertension and diastolic dysfunction exactly 3 years ago. The ILD diagnosis came in a few months later. The clock is ticking, and I am one of the 39%… talk about imposter syndrome: how can I be this functional when the majority of patients like me are already dead?? I’m a fake, an imposter!! That can’t be true, it is not true, and that new data shows what is happening: it looks like the treatment plans of today are really making a difference. My pulmonologist feels that the drug that I’m taking to control my lung disease is a game changer, and that drug was only approved for use with scleroderma patients within the last decade.
For some reason the term 39% Imposter has stuck with me. That’s me. I’m not really all that sick, because only 39% of me is pretending to be sick. Or well. Whatever works today. I’m thinking about a tee shirt with the slogan. I’m rocking the imposter persona. Maybe a shirt that says 39% Imposter and 100% Survivor…
I mailed back the heart monitor last Monday and now I’m waiting for the results. It has been a difficult three weeks because the flare just won’t go away, my wrists and knees are being bad boys, and now I have painful heart palpitations. Sigh. It is always one thing after another.
And yet, in my heart, I don’t feel sick at all.
Imposter Syndrome.
But only 39%.
Yarn, Books & Roses 
I think you have gracefully owned it! 🌟
By example, you are showing all of us who don’t do so, how to seize the day, even if our wrists metaphoriclly hurt to do it. This post brought me up short because it made me realize that I’m wasting many of my days. Thank you for enlightening us by sharing some of your health journey with us.
I can relate to family not wanting to know about a chronic illness whose prognosis could be difficult to deal with. One of my sibs is going through a recently diagnosed chronic illness with a currently uncertain outcome, only he’s elected to not tell anybody else in the family besides his wife, kids, and me. I think he feels that he might be shunned because the others might not know what to say.
Please toss your imposter syndrome in the bin for the garbage collectors to pick up next week. Just make sure it doesn’t land in the recycling bin.
Chronic illness is really difficult for everyone. In many ways, it is a life altering diagnosis, and the ripple effect is pretty significant. Friends (and family) have a tendency to drop away as the sick person can’t keep up, and there is pushback on limitations. It is like what you said… they don’t know what to say, and they move on with their lives. Hugs to your sibling. I hope that things have the best possible outcome.
Tomorrow is trash day. 😉
Why wait for tomorrow when you can toss it out today? 🙂
Well, I meant tomorrow is when the trash goes out for the big truck that hauls things away. Of course it is already in the trash can… 🙂
How very sad that any seriously ill person does not get full belief and support from their family. I am so lucky. My dad was a doctor. I grew up around doctors and worked with doctors. I believe and trust what they say, as does all my family. The great strides being made by medical research every day are what keep improving those survival statistics. (My cancer in 2015 was knocked out with a drug approved just a couple of years earlier.)
Admittedly you are kind of hogging all the diagnoses, but you’ve got a determined smile that shows how to go about it. (And no imposter could possibly remember all those disease names, much less spell them!)
It has occurred to me that refusing to acknowledge the diagnosis and engage with the person who got it may be a type of grief, but I also think that people may be motivated by fear and are trying to protect themself from becoming involved. They just don’t want to have their own lives changed and disrupted. Either way, it is a shame.
The new advances in medicine are just tremendous, and I am grateful for the ones that are now in the pipeline.
I am glad you are taking care of yourself! (And that the kitties are there to help.) I’ve seen how people react to invisible chronic illness while watching my hubby talk to people about his arthritis, and our society needs to do so much better with how we deal with health stuff.
Thanks for this post. I’m afraid I may not be as sympathetic as I should be to my DILs illnesses. Fortunately, my son, her husband, is terrific about making sure he cooks to avoid foods that trigger her migraines, etc. She does struggle with her dad, who lives with them, not accepting that her dietary restrictions are real. You have an amazing positive attitude which is key to survival. According to the “death clock” app I have less than 2 years to live thanks to my negative attitude. Time will tell.
Oh, we will not mention the “death clock” as I am pretty sure that mine is broken or in overtime. It is so hard to understand limitations that are invisible, especially when we all know someone who carries on to make a scene or to get attention. They don’t want a solution, they are intent on milking that problem for all they can! (I was a high school teacher: it is a real thing for sure!! I’m talking about some of the other teachers…)
Good for your son! We just had Thanksgiving at my house and I’m so grateful that everyone helped make a meal that met all the dietary needs of everyone at the table.
yes, alot of us struggle with family and friends who basically aren’t supportive. It’s taken me three years but finally I had had enough of the “fake acting” and trying to appear normal because it’s uncomfortable for people or they don’t know what to say or how to help, or the comments. And it’s been a long process. People are more concerned about people who have much more serious diseases, but still my life is incredibly difficult and no less important than others who are going thru things. And yes it could be worse but I have a lot of very serious problems and now I am all about protecting me, not faking it to make someone else feel better, or worrying someone thinks I’m a hypochondriac. They have no clue what this life is like.
you do need to own it, you are seriously ill. I so wish things were better for you but you seem to do an enormous amount of things for everything you go thru, and I’m in disbelief. Your positive attitude is amazing, and makes me want to strive to be like you. Thank you for sharing
hugs across the internet
I had this epiphany at the car dealership when I took the car in for service last week. They ask if you want to make a donation for breast cancer; it is a horrible diagnosis, but the survival rates are better than they are for systemic sclerosis at this point. I think that I was a little raw because two more patients in my support groups just died, both young mothers. It is what you said… people are more concerned about serious diagnoses, but kind of dismissive of the slow downward grind of uncurable progressive conditions. Like you, I tend to pretend that I’m fine, but I have to carefully plan and limit my trips out of the house because the crash is really something. I am trying to be more honest about my limitations.
Thanks for the hugs across the internet!!!
I am so sorry that you are confronted with all these additional difficulties on top of your illnesses! Thank you for sharing your experience.
You are brave! Keep writing your blog. Thank you for sharing.
I looked at your blog; lots of good info there that I am sending on to another scleroderma patient who is really struggling with frequent urination and other bladder related issues. So far I’ve avoided that particular complication. 🙂
Thank you. I try to information that is helpful. I am always searching for valuable tips, information that is hard to find, medicines, therapies, supplements, studies, etc. that could help my readers.
You’re so brave! Sending you hugs.
Thank you.
This post is so powerful and insightful, shedding light on the challenges faced by individuals dealing with chronic illnesses. The narrative is compelling and thought-provoking. I’m curious, how have you found ways to cope with both the physical and emotional aspects of navigating through your diagnosis and treatment journey?
Oh, that is a big question! I have thought about this a lot since I am doing much better than expected in spite of a cascading list of diagnosed conditions that carry poor prognoses. I blogged about it here: https://yarnbooksroses.com/2024/05/16/the-scleroderma-chronicles-resilience/
I’ve read that post, but I will comment here.
I asked my Chiropractor this week whether he noticed a difference in the success of his treatment based on the attitudes of the patient.
He was very definite about how a positive patient who expected good results got them while negative patients didn’t.
The other thing he noticed was that positive people called for help much faster than negative people.
Stay positive and enjoy the best quality of life you can.