When Physical Appearance is an Illusion of Normal
“You look great!” “Doesn’t she look fabulous?” “I’m so happy to see you doing well!”
It is easy for anyone to get caught up in first impressions. We are quick to pass judgment on someone’s physical ability based on a simple greeting. It’s not surprising that my family notices my outfit (that I probably changed 10 times), the makeup, the smile, and the apparent high level of energy. Behind the exterior, most of us with chronic illness and pulmonary hypertension feel far from what we allow others to see. Under the makeup, many of us have eyes that are tired, lips that are cyanotic, redness from the medications, or a pale complexion.
My exhaustion can be hidden. My eyes come alive with some shine from eyeshadow. It’s no surprise that family and friends believe we are doing well. Many are ignorant of how much work we must put into making ourselves appear this way. Those with chronic illnesses are magicians and illusionists. What others see on the outside is a distraction from what is really taking place in our lives. We create the illusion of “normal.”
It is important for those of us with chronic illness to spread awareness and start a conversation about the difference between looking great and feeling great. The holiday season can be challenging when we hear “You look great!” as we are welcomed into the party by our family and friends. I like to use humor when I am talking about my illness with my family and friends. It makes me uncomfortable when I am addressing the realities of my illness, so a joke can help to ease that tension.
After the “You look great” comment, I may say something like “Thank you, it’s the makeup!” or “You should see me without this bronzer on. I’m looking like Casper!” or “I’d take off the lipstick but I don’t think the blue would go well with what I’m wearing.” However you decide to approach this topic of conversation, it’s important that you feel like your voice is heard. Saying “Thank you, today is one of my ‘good days’” or “Thank you, but believe it or not, I’m not feeling that great today” is a good way to convey the message.
For family and friends, remember: Just because we take pride in our appearance, have a smile, wear makeup, and look cheery and upbeat, it doesn’t mean we are cured or better. It may just mean we are having a good day or a good few hours. It may mean we have spent a little extra time on ourselves that day. We may want to distract ourselves from our illness and play dress-up while we have the energy to do so.
Before and after giving myself the “illusion of normal.” (Photo courtesy of Brittany Foster)
Just because we “look good” doesn’t mean we aren’t fighting for our lives every day. Our reality is that our cyanosis, fatigue, dark circles, and pale complexions are there when the night is over and our faces are washed. The hardest part is that what is going on inside of us still remains, even though our exterior may change. We take medications daily to slow the progression of our illness. We carry oxygen, medical equipment, extra medications, a pulse oximeter, and medical information because we have to be prepared for the “what if.”
You may see me enjoying myself, but what you don’t see is how hard my body is working just to keep me on my two feet. You don’t see my oxygen levels dropping as I’m having a conversation with you. To the outside world, I give the “illusion of normal.” I take a break from seeing the physical effects of my illness as I pass a mirror.
If you are going to give us the “you look great!” compliment, do it! Anyone loves to hear how great they look. Just don’t make the assumption that we are better, cured, or are feeling great. Remember, those of us with chronic illness and pulmonary hypertension are masters of illusions. You may think the magic trick is our transformation when we are dressed up, but the real magic is our body fighting to keep us alive.
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Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Sherry Sanford
When I read Brittany Foster’s article, I started to cry. It was as if I wrote the article myself. I’m sharing this with my family, as most of them really can’t grasp it at all! I would love to be able to get a hold of Brittany. I live in Vista, Ca. 92081
Brittany Foster
Thank you so much for this amazing comment. I am glad others can relate to what I'm posting. It truly warms my heart to know that you were moved by what I had to say. Please feel free to get in contact with me any time. My email is [email protected], I would love to hear from you. So much love to you.
Andrea Rice
Don't want to be the bearer of bad news but I disagree with what you write. I don't have any illusions of normal because there isn't normal when talking about human beings. Human beings are cruel, murderous, fake, abusive folks. Animals are normal. When I was young and cared about the way I looked and wore makeup it mattered because I thought it did. It doesn't. If there are families out there that don't understand about having the chronic illness Pulmonary Hypertension then it is up to the person that has it to educate them about if they are willing to learn. If they aren't, then why socialize with them if you can't be honest and neither can they. They aren't worth your time.
I personally see this illness without a cure as a blessing-in-disguise for me, because it made me choose between living and dying. Before I had existed for seven years after a severe car accident, PTSD and severe depression. Maybe it's my age or stage of life the time when one reaches the age of maturity and doesn't care anymore this is me. I don't wear makeup anymore, don't care what I look like and if others around don't like it they can look elsewhere. For me it's about learning as much as I can from the healthcare professionals striving to do as much as they can to slow down the process so I don't die within the two-year expiration date.
It helps being around optimistic family and friends. I have that. My son is very optimistic and told me I'm not allowed to die, and my best friend told me I have to live. Both very supportive and loving as well as all the doctors, social workers, nurses, researching why I went downhill so very fast.
It's great to be living again. My body is responding well to medicine so hopefully I won't need a transplant for new lungs. Asked to see a nutritionist because I want to be comfortable and not confused when I go grocery shopping, figuring out what to buy, how to prepare it and hopefully enjoy eating again. I have learned so much already that the next step for me is to find other folks that have this illness so that I can offer them support and they can give me theirs. I can't identify with others that have this illness because I know no one that has it. I see myself being so skinny and bony as a person with an eating disorder or a Holocaust survivor and although I don't like it along the journey there have been both good times and bad and I embrace both because the journey is just beginning. It was a year December 2017 that I was first diagnosed.
Please feel free to voice opinions good or bad as I can learn from both sides. It would be awesome to know others that have PH think of what I could learn from others!!
Shavonne
Hello Andrea,
I too have a diagnosis of pulmonary hypertension. Interestingly, reading your comment I find similarities in our stories in that I have dealt years with PTSD and depression as well and still deal with physical issues from an accident that took years to drive by the area without my heartbeat racing and starting to sweat and getting nervous. I also had several medical problems before PH. With the start of symptoms that led to the PH diagnosis was such a challenge because of my lifestyle and I didn't "look" sick but I felt horrible and already with chronic physical illness of course initially treatment is aimed at that must be getting worst. Finally getting the diagnosis and starting on treatment has been a journey. Life is too great for a cynical view on all humans for me even with some pretty bad things in my past at the hands of others. We all have our own normal so when others see us that is their measuring stick until educated. Also, we that are diagnosed with pulmonary hypertension do not have a two year expiration date. That sounds like a carton of milk to me. With faith and the way I believe medical providers and advances in treatments are we able to have long lives after diagnosis. This is being said out of the mouth of someone with two people close that have died with the diagnosis on treatment one in 2016 and then Dec 2017 who like me also had other physical comorbidities that came along with it and/or existed prior to it. I've connected with a PH support group locally and that has been great. Pulmonary Hypertension is not well understood by the general public so we do educate our family and friends but it isn't something easily understood even by many medical professionals so the typical layperson wouldn't understand. I've had to adjust to a new normal and that changes frequently but the article expresses the typical case when people don't always look on the outside with what is going on inside. Sorry for the long response. I hope you have connected locally with a PH support group since your response. Every case and person is different so I by no means know your journey but I hope you have great improvement in your condition and you have a long great quality of life.
Kate
Thank you for this article. I can certainly relate. I get told all the time that "you look just great, you must be feeling good". However, I may not be feeling good. I respond with humor like you do. I just say something like "well, I'm still breathing, and that's always good". People don't understand that by the time I get home, I may be in bed for a couple of days.