But You Don't Look Sick!

Yesterday brought Invisible Illness Awareness week to a close for 2015.  Before I go further, I think it’s appropriate to explain exactly what invisible illness is—an invisible illness is any chronic condition that is not visible by the untrained eye, or in other words, the sufferer “does not look sick.”  It is estimated that 1 in 2 people are living with some type of chronic condition, and of those people 96% have an invisible illness.[1]

There are many things that have been said to those of us fighting an invisible illness that have hurt or offended us, but of the many quotes out there, one of the most common and most hurtful is “but you don’t look sick.”  As a final thought for invisible awareness week (even if it’s a day late!) I thought I’d take a minute to explain why such a seemingly harmless phrase tends to hurt so much.

There are multiple reasons why this one statement hurts, and I’m going to attempt to share why I’ve felt personally offended by this statement.  Before I go further, I know there are times when this phrase is offered innocently, with no intention on the other’s party part to hurt or offend.  I’ve come to realize that there are times that statement is made, and it is genuinely meant as a compliment.  It’s someone’s way of saying “hey, we know you are falling apart on the inside—but take heart, you still look good!”  When offered in that context, I try to take it as just that—a compliment.  However, more often than not, it’s a not so cleverly disguised insult.  You can usually tell the person is insinuating they don’t believe you are sick by the tone of their voice, or sneering look they give you.  In those cases, it’s someone’s way of saying “you don’t look sick; therefore I don’t believe you are sick; I think you are a liar or a hypochondriac.”  I’ve even had someone blog about me in this context!  They can’t “see it” so they don’t “believe it.” (And after over 20 years of being sick, I’m still trying to figure out what these people think a sick person should look like.)

The reason this comment cuts so deeply, when used a verbal weapon, is because it completely invalidates all the pain and suffering one is enduring because they are sick.  We are often grieving over abilities and dreams lost, and someone saying “but you don’t look sick” is akin to going up to someone who just lost a loved one and telling them “well, you don’t look like someone who has lost a loved one.  I don’t believe they really died.” If someone actually did that to a grieving person the majority of people would say to them “how awful! To say that only adds to their grief. Why are you so hurtful?”….and yet, that’s exactly what has happened to many of us in the context of chronic illness.  In one short little phrase, everything we go through is met with disbelief, all with five little words.   What’s worse, is it’s hard to “prove” that we are sick, and those who love us should never ask us to prove it anyway.

In recent years, I’ve come to realize one thing that bothers me about this comment is how untrue it is.  Even at my best, there were physical signs of the illness.  My skin was often red due the rash associated with my illness.  My body was swollen due the high steroids I was on as a child.  I’d get noticeably fatigued and tire faster than my peers.  And that was at my BEST.  As my disease worsened, the signs got more and more noticeable.  My hair fell out and thinned greatly.  My entire body lost fat and muscle tissue. Areas of inflammation became calcium deposits.  I could barely walk and walked with great difficulty.  My “invisible” illness became “visible.” 

The thing that shocks me when I think about this time in my life though is how so many people still could not see the signs of the illness.  They were written all over my body and yet, often if they were noticed, they were not noticed in the right context.  An adult, who was supposed to be over here helping me, laughed at the way I walked (and she was definitely old enough to know better!) I was often too weak to get out and when I could, I didn’t have enough energy to wear my make up, and I’d get endless questions about why my skin was red.  My shawl rash (around my neck) has been brought to my attention (even in my better days) throughout my life and I’ve gotten multiple lectures about how I should not be in the sun without sunscreen even though I hadn’t been in the sun at all… my skin just does that! People do notice that I “look sick,” but it doesn’t seem to register with them that what they are seeing is sickness.  Because of that, I often feel insecure about all the things previously mentioned and more.  When you already feel bad physically, you don’t need someone adding to the emotional pain by pointing out all the ways you look different than “normal.”

I’ve lived life on both sides of the coin.  At my best, I didn’t look sick, or at least there were only slight signs.  At my worst, the signs were more obvious and yet still did not reflect how bad I felt nor did the indicate how weak my body had become.  There are days I long for my illness to be more invisible again, simply because I felt better.  Yet, I know if that happens, I’ll be met with skepticism and find people once again not believing me. It’s not that I want attention or pity, I just long for understanding.  This illness is real, not something I dreamed up or imagined. One of the hardest things about my better days was that I truly did have limitations, even at my best; yet it was rare that I would find people who would truly see my limitations and help me when I needed it.  I long to be able to simply ask for help; not feel like I have to demand it or argue with someone over my limitations. Whether it’s obvious to someone else shouldn’t matter—it’s a very real illness with very real complications in my life. 

So folks, be careful when you say “but you don’t look sick” to your chronically ill friends.  If you’ve taken the time to read this, there’s a good chance you care enough to not want to hurt them.  As I said earlier, I know sometimes it’s simply meant as a compliment…but there are other ways to say it that may come across better.  For instance, say something that validates what they go through first.  Something along the lines of “I know you are going through so much and how you look may not indicate how you feel, but you look really good today.”  Or, better yet, just give the person a compliment and leave the being sick part completely out of it, something like “you look really pretty today!”…. after all, do you go up to your healthy friends and say “You look so good today!  You look healthy!” So why not just give your sick friends a compliment without tying it into their health too? 

I hope to keep blogging more.  I have so many ideas, but just very little time to get them down!  Thanks for reading!

[1]http://invisibleillnessweek.com/quick-description/

P.S. I had to add this picture because it made me laugh out loud!

30 things about my Invisible Illness

1. The illness I live with is: Juvenile Dermatomyositis is the diagnosis that is the most debilitating and the one that I’ve lived with the longest. I also have some fibromyalgia, and was more recently diagnosed with primary aldosteronism and PCOS/insulin resistance.  On top of my illnesses, I also have high sensitivity to medications making it much harder to treat my illnesses.

2. I was diagnosed with it in the year: I was diagnosed with Dermatomyositis in 1993, at 9 years of age.

3. But I had symptoms since:  I had symptoms of dermatomyositis for at least two years before my diagnosis, although looking back I showed some minor indications even before then so it’s hard to tell exactly when it started.  There is no doubt that I’ve been sick since seven years of age, meaning that I’ve lived with dermatomyositis for at least 24 years.

4. The biggest adjustment I’ve had to make is: honestly, I’ve lived with this so long I can’t even remember what my life was pre-sickness.  I’d say the most difficult adjustment I have to make, generally speaking, is living within my limitations.  They do not stay the same and can vary greatly, even within the same week or sometimes the same day.  It’s a constant balancing act to attempt to not overextend myself while also doing as much as I can to preserve the strength I do have.

5. Most people assume: Wow, I could write a blog on what people wrongly assume about chronic illness (and one day I may).  I’d say one of the biggest lies that people assume is that you have some control over your health, and if you are sick, you’ve done something to get yourself there, or your not doing enough to get well.  That is completely untrue.  Sometimes the body retaliates and you have little control over your own health.  Just because I’m not “healed” yet, doesn’t mean than I’m not doing the best I can.  I face battles the majority of people know nothing about, and I do with it a smile.  If you are healthy, thank God for it, because it can literally be taken away from you in a moment. 

6. The hardest part about mornings are: Everything is hard in the morning!  My fatigue is always the most overwhelming in the mornings, and my pain is at it’s highest in the morning.  Most mornings I have to rest, because my body didn’t recharge enough the night before.  Insomnia is a common problem for us with chronic illness, and we struggle to keep going on little sleep.

7. My favorite medical TV show is: Please.  I have enough medical headaches without watching TV about it.  I don’t watch any medical TV, and instead watch stuff that makes me laugh or lifts my spirits.  Give me a sitcom like Laverne & Shirley, Andy Griffith, the Facts of Life, etc any day over a medical show. 

8. A gadget I couldn’t live without is: My phone & my computer are two things I really am thankful for because I have the ability to connect with others through them.  I’ve also grown extremely thankful for the medical equipment I have—my wheelchair allows me to go out of the house, my handrails allow me to shower independently, my toiler riser allows me to use the restroom unassisted.  I’m thankful for all those things and more because they make my life much easier.

9. The hardest part about nights are: Getting to sleep and staying asleep.  The nights can also be difficult emotionally, as if anything is bothering me, it is the night that I tend to think too much about it.

10. Each day I take __ pills & vitamins. (No comments, please)  19 (I think, if I counted correctly!) Many of those are the same pill, I just have to take more than one a day or take a higher dosage than one pill allows.

11. Regarding alternative treatments: I think you have to do what works best for you.  I will say though that “alternative” or “natural” does not equate “side effect free.”  I have had to discontinue natural supplements because of terrible side effects, sometimes due to the drug itself, sometimes due to inactive ingredients, and sometimes because the dosage is too high.  I also have to be mindful what I take in combination with the pharmaceutical medications I must take—if there are interactions I usually opt to continue with what is already working and what has been proven to be successful for my problem.  If I do add vitamins or supplements to my regimen, I always do it slowly.  I have found a few vitamins that have been overall helpful, but they have not provided a cure for my illnesses.

12. If I had to choose between an invisible illness or visible I would choose: Honestly, I know both worlds.  For years, my illness was “invisible” –it was very hard to see from the outside.  After I went downhill four years ago, my illness became more “visible.”  I miss the anonymity of having the “invisible” form because there were times I could just go shopping or do something “normal” and not having anyone notice I was sick.  Yet, sometimes it’s nice to not have people question that you are sick when it’s obvious that you are sick.  That said, if I could choose which I had, I would choose the invisible because that means I’m stronger and able to do more. 

13. Regarding working and career: To this point, it hasn’t been in the cards for me.  Sometimes that is hard, especially because I feel very judged for it. I know though that most days I just have the energy and strength to survive and very little left over.  If God chooses to grant me enough strength and energy one day to have a career, I will have a career.  If not, His purpose for me is different than the “typical,” and I am at peace with that.

14. People would be surprised to know: They only see a snapshot of my life.  Many times, when I’m out in public, I do my best to enjoy myself and not complain or draw attention to my illness.  I’ve always been this way, at both the best and worst times of my illness.  Because of that, I feel like people don’t see or understand that chronic illness is one of the hardest things anyone can go through.  The majority of the pain and suffering goes on behind closed doors, and so making assumptions based on the snapshot is unfair and unrealistic.

15. The hardest thing to accept about my new reality has been: Chronic illness is very lonely, and I still struggle with that to this day.  Visits and good friends are scarce, and sometimes that is what I struggle with more than anything.

16. Something I never thought I could do with my illness that I did was: Everyday, I’m reminded of things I thought were lost forever.  At my weakest point, I was as close to quadriplegia as I ever want to be.  I required help for even the most basic tasks and those abilities were gone for a long time, so I really thought they were gone for the rest of my earthly life at one point.  Everyday when I get out of the bed, walk more normally, open the refrigerator, reach down to pet my cats—I remember there was a time I couldn’t do those things.

17. The commercials about my illness: Don’t exist. My diagnosis is considered three in a million, and no one advertises for three in the million illnesses.

18. Something I really miss doing since I was diagnosed is: It’s hard for me to even remember life prediagnosis, but I think I miss how easy simple tasks use to be.

19. It was really hard to have to give up: When I started going downhill, I had to give up teaching preschool classes at my church.  It was an incredibly difficult decision, and to add insult to injury, some people even made snide and hurtful remarks about my leaving the position.  Even more difficult, I’ve not been strong enough to faithfully attend a church in the last few years.  I hope if my health continues to improve, those things will change in time.

20. A new hobby I have taken up since my diagnosis is:  Painting.  I haven’t painted in awhile, but I need to do that again soon.  I love when I can have a few minutes to create and make something beautiful out of my imagination.  Painting reminds me that we all bear the image of God, and God is the greatest artist who ever existed. 

21. If I could have one day of feeling normal again I would: Goodness, there are just too many choices!  My first thought was “go to Disney world” but then I think I should use that energy and strength for something more meaningful than Disney World.  Taking my niece and nephew to Disney World to have the best day ever is meaningful though, right?  I’m really not sure what I would do.  I would want to do something special that would encourage others and me for years to come that is for sure.

22. My illness has taught me: So much more than I can write in one blog, or answer to one question.  I would say more than anything, it has taught me compassion and given me the ability to minister in a way I would be able to without it.  Sharing in the suffering of Christ allows me to also be able to comfort those who suffer, and it’s a huge gift. (2 Corinthians 1:3-5)

23. Want to know a secret? One thing people say that gets under my skin is:  “You aren’t trying hard enough.”  I hate that phrase with a passion.  In reality, I try harder than anyone can imagine.   Living in a body that constantly attacks you, is really, really hard and if I wasn’t trying, I wouldn’t even be here.  On top of that, many times I’ve caused myself to have a setback by pushing past my limits and trying TOO hard. 

24. But I love it when people: See me as a person and not an illness, and allow me to be a part of their lives as well.   

25. My favorite motto, scripture, quote that gets me through tough times is: And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure.  Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

2 Corinthians 12:7-10

26. When someone is diagnosed I’d like to tell them:  One day, I hope to write a blog on what I would tell the newly diagnosed.  If I could give them only one thought about chronic illness I would tell them, this will one of the hardest things you ever have to live with and one of the most rewarding.  You will learn so much through your illness, and if you allow it, it will refine you and strengthen you into a better individual. Life with chronic illness is hard, but it can still be meaningful and joyful if you allow it to be.

27. Something that has surprised me about living with an illness is: Once again, it’s hard to compare my preillness life to my illness life when I was so young—but I’d say the biggest surprise is how long it has gone on.  When you are first diagnosed, you never expect or think about the fact that you’ll still be fighting that illness 22 years later.  When I was typing this and realized I’d been sick for at least 24 years, my mouth dropped open.  It seems impossible that it has been that long in many ways. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  Anytime you do anything to make me feel like you still know I’m here—whether it’s a call, an email, a card, etc—that means more than you know.  My illness may be mostly invisible, but I appreciate it when people do not make me feel invisible!

29. I’m involved with Invisible Illness Week because: I’m involved for two reasons. The first reason is that we are to be the light of the world and comfort those who are suffering, in hopes that they will come to know Christ.  There are so many people out there with chronic illness who do not know Christ, and who are getting a very poor picture of Christ because of the lack of awareness and compassion people have for those suffering with chronic illness.  The second reason can be summed up in Galatians 6:2-when we bear one another’s burdens we fulfill the law of Christ.  I am above thankful for those who have come along and helped bear my burdens, but that hasn’t always been my experience.  In fact, many Christians I know have not helped bear my burden, but in fact they’ve made that burden greater.  My hope is that with more awareness, it will increase understanding and compassion, and Christians will live more as they were called to live.

30. The fact that you read this list makes me feel:  I’m very grateful!  Reading through this shows you care, and I appreciate it!

I answered this meme three years ago as well.  I didn’t read it until after I answered these questions again.  I found it pretty interesting that some answers were very similar and others very different.  If you want to read what I wrote then, click here to be redirected to it.

Fighting your own invisible illness?  Find the template for your own meme here.