You Don’t Look Sick-by Allison Durant
Allison had a loving boyfriend, a new job and her whole life ahead of her when she was diagnosed with cardiac sarcoidosis, a rare inflammatory disease that causes granular clumps of cells similar to scar tissue to form and can severely affect heart function. Four years later, she has a pacemaker/defibrillator in her chest, several job promotions behind her and her whole life ahead of her – as a new bride. Follow her journey at www.wiredheart.org.
What Not to Say to Someone with an Invisible Illness
1.“You don’t look sick” & “You look fine"
Anyone that lives with an invisible illness knows the pain behind this comment. I always say that it is a blessing and a curse at the same time. On one hand, I am so thankful that my illness is not visible. I can pick and choose who I want to talk to about my illness. I can hide it when I want to feel “normal” again. It also does make me feel good to know that I still look like myself. Being on all of these medicines, especially Prednisone, can change your appearance. So when I receive a compliment that I don’t look sick or that I look fine, I thank my lucky stars that I still look like myself.
However, not having a visible illness is sometimes really hard for others to understand. I have had plenty of situations where I’ve had to deal with the “You don’t look sick” comment. I can’t tell you how many dirty looks and comments I’ve received for parking in a medical permit spot at work. I could not be happier that my employer recognizes the need for these spots, and allows me to park there. However, it is hard when I feel the need to have to explain my situation when I receive a look. All of my coworkers that personally know me are my saving grace. They constantly remind me to not worry about what others think, and that I have a reason for needing this parking spot. It is much easier said than done. I know that I do not owe anyone an explanation. But I am human, I am a very sensitive person and it starts to wear on you after a while.
I’ve been told by a pharmacist at a local CVS that I “didn’t look sick” and she questioned how badly I needed my medicine filled. (Now there is a lot more wrong here than just the comment she made, but to keep this short- She didn’t believe me that I had heart issues even though I had a prescription for heart medicines). That was the last time I went to that CVS.
Being someone who deals with an invisible illness, I sympathize with others having to deal with similar comments. I have a few friends who are dealing with invisible illnesses, and this is something that we talk about a lot. My friend Kathryn put it in a very easy to understand explanation, she said most days she wishes she had a cast on her arm or something visible- that way no one would question her illness. It is sad that we have to wish for things like this to avoid hurtful comments.
2. “Maybe if you take a nap you won’t be so tired”
Most invisible illnesses include the lovely symptom of chronic fatigue. Now this isn’t a normal tired feeling. The fatigue cannot be relieved by simply taking a nap. This type of fatigue is similar to when you have a really bad flu and can’t get out of bed. Imagine feeling this way almost every day and having to go on living your life. The fatigue is so bad some days that I can’t fall asleep because I am too tired. (I don’t even know how to explain that one!) It is hard to tell my friends and family why I can’t attend a party or go out to dinner some days. I get a lot of “You’re canceling again?” “Maybe you will feel better once you are out” “Just come-you can sleep when you get home” I feel like I am giving the appearance that I am lazy, when in actuality; I want nothing more than to have the energy to go out! With my disease, when I am tired- I need to lie down and rest. Not necessarily sleep, but rest. If I don’t, I will be dealing with palpitations and not feeling well for days. I need to listen to my body which isn’t easy. There has been many times where I have pushed myself to do something and then I paid for it later.
Another comment that I’ve received which can be hurtful is- “I wish I could lie in bed all day.” To be completely honest, I feel like shaking these people. If only you could walk in the shoes of someone with an invisible illness for one day- you would never wish that again! I do not want to lie in bed all day, I want to have the energy to get up and go about a normal day like everyone else.
When I try to explain my fatigue, I often receive advice that I should sleep more or take more naps. I so wish this was the solution…
3. “You’re too young to feel like that”
All I can say to this one is “Thanks for pointing out the obvious.” I didn’t choose this and there is nothing I can do to change my situation, so please accept it and move on.
4. “Are you better yet?”
The thing about most invisible illnesses is they are chronic and lifelong. Most people have to be on some sort of treatment plan for the rest of their lives. Since not much is known about my disease, I don’t know how long my treatment plan will be. But I am expecting my plan to last the rest of my life. When I receive comments like this, I would like nothing more than to say “YES- I AM HEALED!!” I hope one day I can say that, and that is what I am working towards. But in the meantime, this comment just reminds me that I am not better yet- and it hurts.
Dealing with an illness itself is stressful enough. The added stress of having to fend off comments like these is definitely not needed.
All in all, I think these comments are made because people just do not understand invisible illnesses. I don’t think any of these comments are meant to be malicious, and I really don’t think the commenters realize the pain and frustration they are causing. My hope is that everyone will think twice before judging someone next time. You never know what they could be going through.
Tell us what advice you have for someone whose friend or loved one has an invisible illness.