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.