We have all heard the dreaded saying "But you don't look sick?" But the last thing we want to do is walk around looking like death 24/7. It is true that when you look better you feel better, but there is a fine balance between spending tons of hours putting on full face make up, hair done, and full
“But You Don’t Look Sick ”
There is a amazing growing community of our readers who have been using twitter to connect by using the hashtag #spoonie at the end of every post. These people are all fans of butyoudontlooksick.com and are all somehow connected to "The spoon theory". I personally (Christine) use t
Explaining an invisible disability can be difficult. When someone looks perfectly healthy, it can be hard to understand what they're going through, or that it rises to the level of a diagnosed disability.
Have you heard sick people talking about 'spoons' and wonder what they were referring to? The term 'spoons' was coined by Christine Miserandino in 2003 in her concept The Spoon Theory, during which she uses spoons to explain the fatigue caused by her illness. She used twelve spoons as a visual aid for units of energy and asked her friend to describe a typical day, during which she took a spoon away for every activity that used up a unit of energy. She explained that she has to look after her spoons to avoid running out by the end of the day and that while it is possible to exceed your limit and borrow spoons from tomorrow, that it will mean that tomorrow might be a real struggle if you can't start off with the usual 12 spoons.
Leukemia is a strange disease. As I observe people in the Leukemia Center waiting rooms, I'm hard pressed to know who is the patient and who is the caregiver. With some exceptions, we don't look sick. Of course, there are the few who arrive in wheelchairs or have bald heads or wear head covers, but for the most part, we are a healthy looking bunch. The only way to pick us out of the crowd is to look for the ID wristband or the telltale colorful wrap indicating a recent blood draw.As cancer patients, we have good days and bad days. The same goes for our looks, too. Some days you don't look great. Other days you look just fine. However, without the outward signs, people don't understand the battle we wage. It's not that we are seeking pity, but we need the support of our family and friends.'We look healthy. We aren't' People don't understand that we may be in a life and death struggle.I had some friends who refused to get the flu shot -- ever. What they don't understand is that even if I take the flu shot, I still have about a 30% chance that I will get the illness.
Treating friends and family with education and patienceThe question, then, is this: "How do we handle this problem?" The answer is two pronged, education and patience. Those who are near to us, family and friends, need to be educated about leukemia and other types of cancer. These people need to know how serious the disease is and that we will not always look sick. We need them to know how to help us stay healthy. My family and friends know not to come knocking on my door if they suspect they have an infectious disease -- even the common cold. They call or email or text. It's not convenient, but it works.
Cancer is a strange disease. It is an insidious disease. No, we don't all look sick. But we are. And we need to take precautions to protectourselves from complications.Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.
When you tell people you have lupus, they always seem to know someone who also has it. They always say that they are doing okay. I always wonder how one can tell how well someone is from just looking at them. Realistically, they can't really determine when someone doesn't appear to be unwell. If that person hasn't communicated that they are not doing well, the conclusion that they are well is just an assumption.
"But you don't look sick," is often stated to lupus warriors. I am not sure what one expects "sick" to look like. Right now, sick looks just like me. Don't be offended if someone reaches out and touches your hand briefly when you state this, wringing it a little, just to let you know the anguish about having lupus. You see, although one doesn't look sick, they are, and you must understand that sick can be invisible, hidden, and manifested totally different in everyone.
Yes, I know Susie Ann was able to do this and that. I understand Charles still cuts the grass every Saturday in the sun. Even Mary has written a book and is doing so well in your eyes. You don't know the struggle Susie Ann, Charles, and Mary have had to go through. You may not realize how different one lupus fight is from the person you are familiar with. Do not be alarmed when they look at you like a deer in headlights because of your comments. Since they can't do what you believe they should be able to do because of the person you know with lupus, it may make them a little annoyed.
Before saying that someone doesn't look sick, realize the majority of people begin the day with an infinite number of opportunities and the energy to pursue whatever they wish. They are generally unconcerned about the consequences of their conduct. A lupus warrior has to think through it all before planning and then be prepared for the unpredictability of having to cancel.
I was taken to my local hospital by ambulance in a terrified state. I was admitted immediately for what ended up being a ten-day period of which I endured test upon test only to find my doctors stumped. On the tenth day, I was transferred to Johns Hopkins, one of the best hospitals in the country. I was an inpatient there for 4 days and was seen by multiple specialists whose final diagnosis was psychosomatic illness and referred me to a psychiatrist. My family and I were completely flabbergasted that these doctors thought I was mentally ill and making myself sick. But, for the sake of moving forward to truly find out what was wrong, I saw the psychiatrist and was given a clean bill of mental health, aside from situational depression.
A week later I had the biopsy and it proved, without a doubt, that I had polymyositis. However, upon returning to Johns Hopkins with the hope of starting treatment for this rare disease, I found nothing but doubt. And part of it, I believe, was because I did not look sick on the outside.
The Twitter hashtag #MissingMillions is quite apt in describing those of us who develop chronic conditions (not all virally triggered). We are missing in action. Some people are chronically disabled by their underlying conditions. Others, such as myself, look okay on the outside but are crumbling underneath.
By 2014 the striae was so bad I could no longer hide the parts that crept down my arms and behind my knees. Little purple spider webs encasing me, showing how thin my skin was getting. I could feel my skin slowly rip. I waited for everything to just splash out onto the floor like some horror movie. I had stopped looking in the mirror long before then. I am not sure when I stopped making eye contact in situations where I did not have to. I avoided walking in front of reflective surfaces. When I did look in the mirror to apply layers of makeup, I no longer recognized my face.
I have surrounded myself with an abundant support system of professionals, colleagues, friends, and family who are invested in my wellbeing. I have learned to look inside myself, take an introspective approach to my physical and mental health, and check in with those close to myself. Perhaps it is partially me reality testing because I am so painfully aware of mental health outcomes with individuals with CD/CS. I have learned to trust and have established professional, yet empathetic relationships with my medical providers. I have interacted with caring NPs who understand that letting me vent about an issue, one that will not change overnight or maybe ever, is valuable to my ongoing care. Sometimes I still panic if I gain a few pounds in a week, or if I think my face looks too round, or I wake up from a dream about my hair falling out. I still have mediocre days filled with headaches and irritability that I wish I had never gotten sick. But, I have learned so much from my experiences and I am alive. I am grateful.
This is not considered therapy. If you are in need of a formal evaluationand psychological services; you may locatea qualified psychologist at: www.apa.org.You may also look through our comprehensivelist of qualified licensed providers. The EPIC Foundation has no affiliation with Epic software.
Since I was diagnosed with chronic lymphocytic leukemia in 2015, I swear I have heard some of everything! LOL! But the most reoccurring statement I have heard the most in 7 years has most assuredly been... "But you don't look sick?"
I do know what surviving looks like. And that changes from day to day, but I am! This journey has taught me a lot. I will always look too sick for some and too well for others and some honestly won't pay you much attention. That's fine! Keep pressing forward, embrace the great days... make the most of the icky days... and be thankful for every day, no matter how you look! 2ff7e9595c
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