Caravan Sonnet: Answering the "But You Don't ACT Sick" statements

1/8/15

Answering the "But You Don't ACT Sick" statements

There have been numerous (and very well-written) articles in Chronic Illness world relating to the often heard (and often emotionally dismissive) "but you don't look sick". I personally have never written a post on it, even though I have often thought about it. Most Chronic Illnesses (and even serious illnesses) and Chronic Pain is not outwardly visible so it can often leave the bystander confused that if someone felt "so poorly" they surely would look sick. (Frankly, I have never really understood exactly this sentiment because what does a sick person "look like"? Is there a general stereotype? Is it someone who is rail thin? Well that doesn't always "fit" because many medicines induce weight gain and inflammation. Is it someone who has lost all of their hair? Well that doesn't "fit" because even some seriously ill Cancer patients - where everyone "connects" treatment with loss of hair do not lose their hair. Is someone who is sick "look sick" when they are completely pale? Well that doesn't fit because some medications (and herbal supplements) induce facial redness and flushing.) SO maybe we as a society don't know exactly what someone who is sick looks like. Maybe, if I am so bold there might not be a set standard and we need to embrace those who are struggling without having any preset ideas as to what a person will look like when they are sick... 

or what they will "ACT" like. 

I have heard the "but you don't look sick" (or something along those lines- "well you look absolutely wonderful") statement so many times throughout this journey. Sometimes- it is by well-meaning friends and family members who are trying to boost morale. BLESS them. Other times it is by someone who I truly believe is genuinely trying to be encouraging. Either way, I have heard it said so many times that I have lost count. But recently I heard something I hadn't heard on this journey. I was chatting with someone who I hadn't spoken to in a while (but who follows the blog and my instagram feed) and they said (after I answered how I was doing) "but you don't act sick". 

I was completely caught off guard. I asked them what they meant and as they (somewhat accusingly) stated that "in the past year you have traveled out to California (twice), gone on a cruise, written three books (with one being published in November), worked on graduate work, ran an Etsy shop, started SEEN Gathering, and have agreed to speak at a couple of engagements in the coming year... I mean, Rebecca, your instagram feed doesn't even show someone who is laying in a hospital bed. Most of the time you are SO upbeat on the blog and on social media... you just don't act sick.

I was speechless. Part of me wanted to jump to the defensive and start listing off a rebuttle to everything that they said and the other part of me wanted to hang up the phone. I am embarrassed to say that it was the small 1% of me that wanted to answer with a loving and Christlike attitude. My defensive attitude won for several minutes on the phone as I was speechless and then started to explain that I only traveled to California because my doctors office is located there, that the cruise was a gift... 

and then I stopped. 

I quietly asked if we could continue this conversation at another time and we agreed to come back to it. For several days I grumbled to the Lord about the fact that I felt like I was now not only "not looking sick" but now being accused of not "acting" in a certain way.  And then I started thinking... what does a sick person act like? So I called my friend back and asked her what she meant by her statement. Basically she felt that since my instagram feed shows lots of outside pictures and that it is happy I don't act sick. We talked for a while but as we hung up, my friend admitted that she felt that if I was "truly sick" (her words) then I would be acting more somber and forlorn. 

So for the past few weeks I have really been thinking about this conversation and about the stereotype of how "sick people should act". I started questioning friends and family (and even strangers) and asked what their stereotypes were about "how a sick person should act" and what they thought and questioned beyond the scenes about those that they know who are sick "but don't act sick". These were some AWESOME conversations. Here were the most popular questions with my answers that I gave them: 

Do they spend a lot of time in bed? 
Yes, most of us do. I currently spend approximately 20 hours in bed. The other four are spent taking detox baths, working on the shop in the room next door to my bedroom in my house, doctors appointments, etc. Sometimes (where I get most of my outside pictures from) if I am feeling strong enough I will ride in the car to places although I don't go into stores a lot due to my immune system.

Does a person who is sick cry a lot? 
Oh my yes. I find GREAT comfort in Psalm 126:5 each day. At the same time though I know that if I spent all of my time crying about my situation I wouldn't have any energy to fight my diseases. Some days the tears flow uncontrollably but on those days I curl up with the Psalms and ask my sweet friends for extra prayers.  

Does a person who is sick really laugh? Shouldn't they be more sad?
Y'all I try to find humor in the smallest of things ALL the time and I am not alone in this. AND we do laugh over here A LOT in my house because God is still good with lots of blessings everyday. 

Why doesn't a person who is sick share their problems and health stuff more if they feel so terrible?
I don't know about you but I frankly love to "escape" when I am on social media. I love connecting with others, I love bringing awareness of Lyme Disease and its issues (and the other health things I am dealing with) but most of all I want to bring glory to God in each of my endeavors. To be frank... my symptoms are often debilitating and often times extremely personal. I think that I cover it fine by saying that I deal with a ton of pain, nausea, and fatigue. If you want to find out more I am sure you can hear it from someone but I don't care to share the details of spending 2 hours throwing up. *smiles*

Does a person who is sick act normally and do normal things? 
AS MUCH AS POSSIBLE. The best example that I can give of this is when I went on the cruise in February last year. I asked my best friend that we not talk about anything health related and that if at all possible I wanted to be known "not as the sick girl". I didn't want us to lie, but if at all possible I wanted a "break away". HONESTLY- it was the best week of the year. Yes, there were times of tears, but it was SUCH A BLESSING and I cried several times realizing that I could still hold conversations that had nothing to do with illness. 

In the last couple of weeks I have realized something deeper in this whole situation. Beyond my defensive stance at the beginning and beyond what I mumbled about, I realized with startling reality that God had also abundantly answered a prayer that I started praying the first year I became housebound and bed bound. It wasn't a prayer that was easy to pray or one that I even knew the difficulty of living what I was praying, but it was the cry of my heart:

"Thank you, Father, for these my friends. Thank you so much for these beautiful people, who are so very dear to me. Let my grief be mine alone. Anoint my countenance with the oil of joy, that none may ever feel embrassed to laugh in my presecence. May no joke or sharing of the ridiculous be stifled because I am there. Wrap me in the garment of praise, that I may not burden others with the heaviness of my grief." 
(Darlene Diebler Rose)

The Lord has been so good in answering this prayer a thousand fold on this journey these past several years. He has anointed me with the oil of joy, that none have felt embarrassed to laugh in my presence and jokes and sharing of the ridiculous has abounded abundantly within my family and friends. There have been times of lots of tears and grief but I seen in so many ways the way that the Lord has wrapped this journey in the garment of praise, day after day, moment after moment on this journey. 

Perhaps it doesn't "look" like I "act" sick, but I can assure you behind the scenes the only reason for that would be God. Him alone. He has been so merciful on this journey and I am so grateful for His love and the way that He has carried me each step of the way. (Psalm 68:19) Perhaps, like so many others, that is the only answer that I can give for the "But you don't ACT sick" statements. Because I know for sure that the Lord is close to the brokenhearted. 

I see it every single day. 

9 comments:

  1. Oh wow, here I view you as such an incredibly strong woman and Christian for how you handle these health problems, and your amazing strength gets your illness called into question! I admire your strength and great faith so much. God has certainly answered that prayer, as your life is exactly proof of how someone can be so sick and yet completely relying on and finding joy in the Lord.

    I've struggled in the past with how much to share and how much not to about life with chronic illness because, while you want people to start to get it, at least a little, people who aren't sick tend to not really take keenly to the truth when you start sharing it, I've found. It's abnormal to them, and while some will read and comment, some will not know what to do with the new info and so do nothing. So sharing short summaries of how you're doing on social media makes complete sense--plus, for many it is their chance to act like everything's okay. And yes, we definitely cry a lot. And we also may actually be the quickest people to laugh because we need every bit of laughter and every smile we can get.

    Anyway, thank you for sharing this new view on "looking sick." It was an interesting one to think about and gain even more insight into how chronic illness is viewed.

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    1. Kacie,

      THANK YOU so much for your comment. First, your words were such a beautiful encouragement to my little heart. THANK YOU for taking the time to leave a comment that was so sweet and encouraging. I was so encouraged by your words!!

      I was glad to read that I am not alone with how much things to share about chronic illness life. I TOTALLY agree with you that it is very abnormal to live with chronic illness (especially in the "younger circles") and so while I do hear comments of encouragement from some, I hear alot of silence from others. I think you hit the nail on the head- people sometimes don't know what to do with all of the information.

      I LOVE that you said: "And we also may actually be the quickest people to laugh because we need every bit of laughter and every smile we can get." SOO true!!

      Thank you again for your words, for leaving such an encouraging comment, and for truly encouraging my heart today! Thank you again!!

      Blessings,
      Rebecca :)

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  2. You are very strong. It is hard when people say you don't act sick or not understand how being sick can affect ones life.

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    1. Dani, Thank you so much for your words of encouragement. I definitely do feel like a strong person but I do believe that the Lord gives strength for each day, and sometimes (as in today) strength for each moment. :) Thank you so much for your encouragement lady!! I am loving the opportunity to reconnect with you. :)
      Blessings,
      Rebecca

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  3. I think there is sometimes a disconnect via social media and real life. I know there is a problem in fashion and lifestyle blogs with a "perfect" image of a life that is imperfect. I definitely love everything you've written here and it has been very educational. But coming from the outside, I'm wondering if maybe it would be helpful if you found a way to balance honesty about the hard times with all the wonderful things you manage to show on Instagram. I say this simply for the sake of conversation and not out of any form of judgment or even advice.

    What I'm wondering is; would it be helpful if people knew you were sick AND also had a full life? I cannot imagine being bed bound or house bound. I'm one of those never-sick types. The only prolonged "illness" I have ever had was...well, childhood epilepsy that was managed well with medication and also a broken leg in college. But the broken leg was more about being unable to go places and do things because of snow and winter than it was about being bound by sickness. Though I did experience a lot of difficulties.

    Anyway, that's simply anecdotal. What I'm saying is; I've had friends who suffer from chronic illness and I have no understanding of what they experience. If I saw a bright, full Instagram feed; travels; a healthy-looking exterior...I think I might be confused. And I also wonder if being honest would be a lending hand of support to someone who may be experiencing something similar but doesn't know what you share because you don't show it much.

    Simply food for thought, albeit a few paragraphs of it!

    Anyway, I really enjoyed this post and I think it was really helpful. I am a new reader to your blog and had no idea what ails you. I love reality and learning and so I want to thank you for opening up and sharing your story. It is interesting but it also helps give me a fuller understanding of the world and I appreciate that.

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    1. Dear Fenna, Thank you so much for taking the time to comment on this heartfelt post of mine. I wish that I could have written you back directly and corresponded with you directly by email about this important subject and topic that is so close to my heart. Unfortunately though you are a "no reply blogger" so I will respond here in hopes that you will see my response.

      In response to your first paragraph, I do agree with you that there is a disconnect between social media and real life. (I even point this out in this post.) At the same time though I do believe that (as I mention) I am showing a balance between the hard times that I struggle with as I share in depth and in very vulnerable ways the heartache of dealing with a serious illness that has wiped my independence at such a young age and the difficult and the pain in this fight. In addition to different social media outlets, two of the ways that I have chosen to do that is through my personal health updates, "Notes from the Porch" (which you can read here: http://www.caravansonnet.com/search/label/Notes%20from%20the%20Porch) and also, more recently, "the Lyme Diaries" (which you can read here: http://www.caravansonnet.com/search/label/the%20Lyme%20Diaries) which I have written specifically to help those who are hurting and struggling with Lyme Disease. And, as a really good friend has said, she can tell what kind of day it has been by the quotes that I write in the subject of the instagram posts. I share that only to say the following...

      I think no one expects, especially at such a young age to "get sick" and to deal with a serious health issue- especially one for a long term fight. No one knows how they will respond, no one knows what it will be like unless people have walked it. And honestly there are some people that share in detail all of the ins and outs of their Disease and how awful it is, but from the beginning I was very clear that I, on the other hand, have chosen to share how my faith in the Lord sustains me through those difficult days. Neither is wrong, neither is right. It is just the choices that we all make when we are faced with these circumstances. I say that to say that I don't feel that one is more helpful or "non helpful" to someone who is struggling with illness. I think the Lord can use all different people to encourage and help others along the way. I personally have found amazing encouragement from "both sides" in my health journey.

      I think that we have choices with how we respond to issues in our lives. I personally do not feel that there is a disconnect between having a "bright, full instagram feed: travels, a healthy-looking exterior" and being seriously ill. The Lord has said that HIS joy is my strength and that is a verse that I cling to everyday. Maybe my "travels" are only right down the street or out my window, but the Lord has given me joy to celebrate and just because I am sick that doesn't change that at all. BUT I do have such a heart for others going through seriously illness and that is why this summer I founded SEEN Gathering (www.seengathering.org).

      My main point in this post was only to address this conversation that we are having... I really believe that there are stigmas on how people believe "sick people", especially "younger sick people" should "look like or act like". My second goal was also to give thanks to the Lord for His strength for each day. The Lord has been so good to me ... despite the personal struggles with illness, God has been incredibly good. He has answered my prayers for grace and joy on this journey a thousand fold on this journey these past several years.

      I hope that helps answer your comments Fenna. I appreciate the time that you took to write them and the time that you took to leave such a thoughtful and thought provoking comment. I hope that you will stop by again and I look forward to hopefully connecting more with you in the future.

      Many Blessings,
      Rebecca :)

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    2. Well, I am a new reader to your blog. So I don't know everything you've written, for sure. But I think you have made some very good points! I think the way you choose to go through life is great. I think there definitely are stigmas to what sick people look like and how they act and I think you are definitely doing your part to break that down.

      I've definitely appreciated this conversation!

      I do have one more question; Does Lyme Disease go into remission or can you get better?

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    3. Aww thank you so much for your kind words! I love that we have an opportunity to connect here! :) I have so appreciated this conversation too!! To answer your question about Lyme Disease... it honestly would depend on who you talked with *smiles*. I do personally believe that I can get better and beat this disease (and so does my medical team) but the journey to get there is INCREDIBLY long and difficult. BUT I do believe that I will beat this. Unfortunately, for all Lymies, some of the damage that has come with the disease ( arthritis, etc.) can be a life-long issue, but I do believe that the disease itself can be conquered.

      Thank you again for your comments and a lovely conversation!
      Blessings,
      Rebecca :)

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  4. I so get this I know a couple of My Friends and Family who suffer this 'Is but don't look it' a lot of times people just don't understand if they can't see it they don't believe it

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