So Are You Better Yet? and Other Questions We Don't Want to Hear

 "So are you feeling better?"
"Have you been able to get off your meds yet?"
"Get well soon!"

Sometimes it feels like everyone is asking the same thing: "Why aren't you better yet?"

I used to look around me in amazement, and a little envy, at all the healthy people who continued to live their lives they way they wanted while I had this whole new reality of life with a chronic illness shutting me down.

Over these past few months, especially since I started doing research for Sick & Tired, I've been surprised to know that a lot of those people were just like me--people who didn't look sick, but inside struggled with a barrage of symptoms that were difficult, discouraging, and sometimes debilitating. 

If the statistics are true, about half the people you look at within any given moment are sick just like you. Most of them don't look it. Some of them rested the entire morning just to be present wherever you are, even if it's the grocery store. Some need to get home soon so they can eat or take pills or get a shot before they crash. Some are functioning under a discouragement more painful than their worst physical symptoms.

So, in recognition that there are a lot more of us out there than most would think (even us!), instead of asking the kinds of questions that make us want to scream, eat a carton of ice cream, or hide from the world, I'd like to ask a few questions you can actually answer. The following come from the discussion questions in Sick & Tired, due for release June 26th. I'd love to hear your answers below, and you might enjoy actually getting to share them without someone saying, "Have you tried __________?" or, "If you'd just exercise more..." or "Can't the doctor do something?"

So here you go. Take your pick of one or two and answer in the comments!
From Chapter 1 Joining the Club Involuntarily

When did you first approach a doctor with your symptoms? Did he take them seriously?

Chapter 2  So What’s Your Problem? – How to explain your condition with confidence
Do you feel like people don’t take your condition seriously because it isn’t diagnosed yet, or is an “invisible” illness like fibromyalgia or chronic fatigue?

Chapter 3  Sit Down and Cry About It – The real and important process of grieving your loss
How did you feel immediately after hearing you had a condition, or when you realized your symptoms were not going to go away?

Chapter 6  When the Well-Meaning Annoy You – What to do when you’re ready to snap
What phrase do people say that gets to you the most?

Chapter 10 The Belief Test – Can chronic health problems be a gift in disguise?

Do you believe God could take away your condition if He wanted to, so since He hasn’t there must be a reason?

I hope it feels good getting to share in a place where you are believed and taken seriously. One thing I love about the internet is how it gives those of us with chronic illness a place to develop and maintain friendships without having to go out and get exhausted. We can chat with friends from home, while still in our pjs if we want. =) 
Um, if your pjs look like these, please don't tell me.

I'm looking forward to reading your answers, and feel free to respond to one another! 
And if that doesn't encourage you enough, I'm adding below a sneak peek at Sick & Tired. Enjoy!


Be careful about reading health books. You may die of a misprint.

Mark Twain

            Sometimes I want to slap a sticky note on my forehead that says, “I am sick. No, I don’t look sick at this moment. But I am not faking having a disease just because I’m not in a wheelchair, and I am not a freak.”

            Now, I am aware walking around with a note like that on my head would actually put me in the freak category. Not to mention all those words would only fit on a Post-It note if I wrote it very, very small, and then people would have to get really close to me to read it, and that might just put me over the edge. I’m really into my personal space.
            The thing is, I don’t like talking about having chronic health problems that interfere with my life. I don’t like the way people look down, over, and around me when they realize I have a chronic illness. Or worse yet, the suspicious way their eyes narrow when they decide it’s all in my head, or I’m a hypochondriac.
            Why does it bother me to tell people I have health problems? Doesn’t everybody at some point? I suppose that’s the crux right there. For most people, the difference is in the “some point” part. They have a problem. They go to the doctor. Doctor fixes it. Life moves on. It was a small, annoying inconvenience.
            For me, and likely for you since you’re reading this, your problem is not so temporary. You’ve got it for life, or until science finds a cure, which for some diseases is as likely as winning the lottery when you haven’t even bought a ticket. So we make people nervous.
            Nobody wants to have a condition that affects their social outings, work choices, family life, and just general day-to-day stuff. Nobody picks that for what they want to be when they grow up. “Oh teacher!” The kindergartener excitedly raises his hand. “When I grow up, I want to have a chronic illness and have people say how strong and courageous I am for enduring it even though I don’t have any choice in the matter! Woo-hoo.”
            Instead, Americans spend billions trying to avoid anything that even smells like sickness. Our country has enough pills, vitamins, and herbal remedies to make you sick even if you started out healthy, or at least to make your urine turn neon yellow—which is an interesting phenomenon, though likely not worth all the money it took to make it happen.
            We all desperately want to be well. And why not? Being well means you get to be as active as you want to be and in charge of your own daily schedule: How much sleep to get. What to eat. What job to choose, or how many children to have.
            For those of us with chronic illness, we’ve had to give up some or all of those freedoms. And they probably didn’t seem like freedoms at the time. We likely took them for granted until our bodies took them from us. Now here we are, active brains inside limited, broken bodies. But as technology has yet to create a way to get an entire body transplant, we’re stuck with it.
            Unless, of course, you have a neurological problem, as I think I might, in which case I’m sorry about your brain. Getting a brain transplant is a seriously bad idea. You would not even know who you were, and would not appreciate how much better you were feeling.
            I would like to trade in my health problems and be well again. I sometimes think that would be getting my life back. But the truth is, this is my life, and as I have come to (almost) accept that fact and make the best of it, I think there’s hope for me.
            Maybe not to cease being a freak to some, but to cease seeing myself as a victim, as a traumatic case, or even as a lesser being because of my illness.          
            That being the goal, maybe I’ll remove the hypothetical Post-It note from my forehead and put it in my back pocket, to be removed periodically and waved in people’s faces only when I’m having a tough day.
            It’s a start anyway.

Related Posts: But You Don't Look Sick!

Video Visit with Joni Earekson Tada--Don't Waste Your Suffering

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  1. It was not easy choosing a question to answer. I could easily gush out an answer to each of them. But, I chose Chapter 6 When the Well-Meaning Annoy You – What to do when you’re ready to snap
    What phrase do people say that gets to you the most?

    I have a plethora of conditions. My skinny sister and I (definitely not skinny at any point in my life) share these conditions. However, when people see me walking with a cane and hear that I have medical issues, the first response (EVERY SINGLE TIME!) is: You know, if you could get that weight off you would be ____ (insert healthy, normal, healed, happy...). My weight has nothing to do with it, people. If skinny sister has the same conditions, then weight is not the issue. For me, the weight is an added condition. I have tried everything from the boiled egg and buttermilk diet my mother forced on me as a child (I've never eaten a boiled egg since) to lap-band surgery (where I at least lost 150 lbs, but then it stopped dead even though I only eat 1 cup of food three times a day).

    So, please, don't make stupid (sorry, really bugs me) assumptions that the only reason I have chronic illnesses is because I am not skinny! (add ! to infinity)

    1. I hear you Karen!!!!!!!! to infinity =) And by the way, sorry you're stuck with 1 cup of food 3 times a day. Man, that's got to stink. I have to eat every 3 hours whether I want to or not, and sometimes I get sick of thinking about food, but I have to say that's worse.

  2. I can not WAIT to read your book!

    Chapter ONE: Yes, my first doctors took me seriously, and most have. I AM THE problem in most cases. I was named "Queen of Denial". How could this happen when I have soooo much to do?

    Chapter Two: So what happened? I answer according to how is asking. If they genuinely want to know, then I tell them about the accident, and the TBI and Pain, and then a little of where it lead me. To others, who can barely let you get a sentence out without cutting you off, then they get a very short version, as they aren't really listening anyway. They want to know, but not that bad.

    Chapter 3: Do I sit down and really cry about it? The last flood that caused the waters to rise in our area was the time I cried AGAIN. I could fill bottles. Sometimes the tears of just soft rains, and sometimes, they are nice rains, and sometimes, it's gushing. We cry when we bury someone we love, so why wouldn't we cry when we bury our lives? And no one attends or really cares enough to understand? I wait until lights are out, or alone, and let it rip. Then I can handle all the questions that drive us crazy the rest of the day!

    Chapter 4: Many of those used to get me down, but now, I just don't care. I know who cares and who doesn't. So if something is said, I may be upset for a bit, but now, I can just let it go. They don't understand, because they don't ask, or want to know the "why's". I've got enough to handle! :)

    Chapter 5: Was this possibly a "gift from God"? I know what you mean. Sometimes things happen and God allows them to happen because it tells Him a lot about ourselves and others. He's looking at how we respond, which He knows it's going to be hard - Jesus had to struggle three times before the cross, and he had plenty of notice. God is patient with us. But this also test the faith of others. Other's "say" many good things, but now is their time to prove their love and prove their words. God comes for our words and we never know how. I have finally gotten to the place where I can say "father forgive them for they know not what they do". This IS a gift, as I understand more of how a person feels with a neuro issue, such as a stroke, etc..., and horrible pain, no support, crazy doctors, and loneliness. Personally, I think the book of Job (in the Bible) must be read by anyone by the time they graduate, then again when they marry, and again every year. Each time, they will get more and more out of it, and it will be the best training ever received!

    Sorry, I couldn't stop at just two!

    If I had one wish? You didn't ask, but I'm asking! :) ha It would be that others wouldn't be embarrassed, hesitant, calloused, to busy, whatever... to ask instead of assume, to NOT ask if they aren't really interested, (since we can tell), and to remember us a little each month. If we consider all that each family must get done, kids or no kids, life is very busy. Then add that too one being out of commission = a huge mess. Emotions run high, stress runs high, the mask gets harder to wear, and both are run down trying to keep up doing the simple things. We aren't asking for a day in your life. Thirty minutes of your time can change our evening and maybe our week. Yes, for real!

    1. Oh my goodness, I talk about so many of these things in the book!!! I think the grieving thing is so important. We really have lost who we used to be, and I think it is valid and even necessary to grieve that. People who don't end up bitter or feeling victimized.

      I'd write more, but since I put it all in the book, I'll leave that for later. ha ha

      Thanks for sharing today!

  3. My diagnosis of MS came as a relief! I felt vindicated--finally I had a reason, something concrete and could give myself permission to rest. I could lower my standards (which were high, but God likes excellence, right?) and not do all those things on my list.

    1. I know what you mean. I spent 15 years with no diagnosis, and it is so hard to allow ourselves to do and "be" less when we have no name to convince ourselves and others that what we feel is legitimate. I still want to be a good American and push right through symptoms and things, but I am learning that rest is commanded more often than action in the Bible (well, I haven't counted exact numbers, but I know I've read about resting more than just doing for the sake of doing).

      I hope your rest this week is sweet and without guilt, and you even enjoy some of it! =)

  4. I have been told all I needed was a massage, that my symptoms would all just go away, and have been drugged with anti-psychotic drugs without my knowledge or consent before being diagnosed.

    I have Addison's as a result of a life-threatening ruptured ectopic pregnancy (Sheehan's syndrome), as well as asthma, celiac disease, primary immune deficiency,and more recently small fiber peripheral neuropathy as well. I have had to scale down to whatever things I am able to do, and even buy assistive devices and remodel my house to accommodate my illness. Definitely not what I expected.

    So glad to have found your website & book. They've been a real blessing...I'm still reading....

    Deb G

    1. Welcome, Deb! I'm so sorry for all you've been through and how it has affected your life so much. It's so rare to find another Addisonian, and I'm glad you found this site!
      Though I'm sure we'd all love a massage, I don't think it would fix much. =) I imagine you are so tired of people trying to "fix" you. Well, you won't get that here.

      My hypoglycemia makes living with Addison's more complicated, and I can only imagine it's worse having celiac disease with it. I'd love to say something useless, like I hope you feel better soon, but instead I'll say I hope today is a good day for you, and that God sends you some encouragement and hope for tomorrow.


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