Life with Chronic Pain is Hard to Understand
ANKYLOSING SPONDYLITIS,  CHRONIC ILLNESS,  FEATURES,  MECFS - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Chronic Illness: Never Did I Ever Think…


Life with Chronic Pain is Hard to Understand

Chronic illness is a hard thing to understand. There are many things to consider when you are chronically ill and in pain all the time, but until you’ve experienced it, let me explain some of the things you’ll never think of until you’ve been through it. 

Never did I ever think…

  • That I would lose my health completely
  • That I would be worried about traveling when traveling has been my life for years. Now I can barely muster the energy to fly from Taiwan to Canada
  • That I would need flight assistance for the past four years
  • I wouldn’t be able to continue working at 42 years of ageFebruary 2017 when I received my CRPS diagnosis.
  • I would know two years ago that there is a wheelchair in my future
  • That I would have to fight so hard to stay out of a wheelchair because I have been in and out of one since 2011
  • That I would have to use a cane at age 34 and continue using it regularly
  • That there would be days I would not be able to walk
  • That there would be many days it feels like I am walking on shards of glass
  • That I would be in pain constantly
  • That I would be in so much pain that I couldn’t see the light at the end of the tunnel and wondered if I was meant to live the rest of my life in pain
  • That there would be days I wouldn’t be able to get out of bed
  • That I am at the hospital at least once every three weeks
  • That I would no longer be able to wear heels or certain types of clothing such as shorts, short skirt or things with collars because my legs are wrecked or because it hurts to wear certain things
  • That I would stop wearing a bra two years ago because the band fits right over my chest, which is where I have active costochondritis regularly
  • That I would try over 30 different types of medicines from 2009 to 2017 in hopes of easing my discomfort and regaining some of my strength
  • That I would have to give up sports completely. My last long distance run was in May 2012
  • That jumping or sustaining any impact to my legs causes immediate pain and lands me in bed for days
  • I would lose friends because they do not understand my illness
  • I would lose people in my life because they do not understand I will not get better
  • That I can’t catch a full breath because the inflammation in my ribs and chest is so bad
  • That my husband would be caring for me because I am unable to do things like shopping for groceries or lifting anything heavier than my cat
  • That I would be taking 20+ pills per day to control pain and inflammation because of a runaway immune system
  • That I don’t know how to explain what is wrong with me anymore because there is so much wrong, I feel helpless and I don’t know where to start
  • That people probably won’t believe me anyways
  • That so many people would offer medical advice to me when they don’t even know what I have or how to say what I have
  • That people would think I am exaggerating my pain and illness
  • That I would stop writing for a while because the topics I was writing about, I could no longer enjoy. I lost my writing voice. I’ve had to change directions in what I want to write about since I can no longer write about the things I love doing
  • That I missed my sister’s wedding this summer because I was too sick to fly home for it. Even if I had, I couldn’t have participated in the festivities. Her wedding is one of MANY weddings I’ve missed over the years
  • That I was not well enough to fly home for my grandfather’s funeral
  • That I wouldn’t be able to climb more than a set of stairs without passing out
  • That I have not seen my friend’s baby since she gave birth on July 20th because I cannot climb the stairs to her house
  • That I used to see my friends regularly, but I haven’t seen most of them together in over six months (May 2017)
  • That I wouldn’t want friends to visit me because I don’t want them to see me like this
  • That I would choose my outfits when I have to leave my house a few days before I go out and get ready the night before so all I have to do is put on my clothes and get through a visit
  • That I wouldn’t have the energy to talk to them even if they insisted on coming over. I have many friends that visit, but there are days I can barely manage a conversation with my husband because my body is so wrapped up in dealing with pain
  • That pain saps the energy out of you so much, even lifting a glass of water can be impossible on some days
  • That even taking a shower requires me to sit down because I have to think about how long standing in a shower will affect the rest of my day
  • That sometimes I do not have the strength to wash my hair because my back is so bad, I do not have the strength to keep my arms over my head
  • That I would be housebound for weeks
  • That I would venture out of my house once or twice a week for a few hours at the most because it’s all the activity I can handle
  • That I would lose several entire summers because of overdoing things on one single day. I had my days planned out. I followed those plans to a tee. It didn’t work. What I learned is that I have to do less activity.
  • That a mere touch or hug can cause me pain and physical harm
  • That no one will ever understand what my days and nights are like unless they are chronically ill and in pain 24/7
  • That I received my first diagnosis in February 2009 – two months after I married my husband, and my health has been on a continuous decline since then.
  • That I knew there was something very wrong as a teenager, that my main symptoms really starting revealing themselves at age 24 and it took another decade to be diagnosed with Ankylosing Spondylitis
  • That I have developed many secondary issues to Ankylosing Spondylitis, including Fibromyalgia, Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome, and IBS. (With IBS, I’ve received no further info other than that it is borderline IBD and it’s common with my illnesses.) A strict diet is helping to control the issues I have right now.
  • That doctors would look at me and give up on me. (No doctor wants to work with a patient that doesn’t end with a success story.)
  • That my life would never be the same again

This post was prompted this week because I finally realized I could not keep working or doing the things I love without paying dearly for them afterwards. My husband and I prepared for this in February 2017. We decided that we would give things until August 1st to see if my health improved, and if it didn’t, I would start cutting things out of my life and move to full bed rest to get home to see my family next year.

I am taking a step back from a lot of things at the end of this year in hopes that this will give me the time to rest and regain some of what I have lost.

Now you know what I’ve lost to chronic illness.

Here’s what I’ve learned and grown from:






A regular day for me looks like this. My cat knows it. Now you do, too.Bijoux Knows How I Feel All The Time

I'm a chronically ill Canadian who has been living in Taiwan since 2006. I'm a bit of a jack of all trades! I love art, gardening, flower arranging, reading (that's an understatement if you've seen my GoodReads profile), and snuggling with my cats. Animal videos make me cry. I hate cooking. Nothing makes me happier than seeing my garden bloom! Learning about new cultures and exploring the world has been my thing since I started traveling at age 19. A self-professed autodidact, I can speak comfortably on many different subjects and hold a special place in my heart for science, technology, law, health and medicine, and history. You can find me nerding out at home most of the time due to being chronically ill and housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites. Check my About page under Carrie Kellenberger to learn why I'm taking you on this journey with me through My Several Worlds. I can't wait to get to know you better!


  • Joshua Samuel Brown

    My dear, dear friend,

    I am lying in bed bitching about my gout, thinking about you and your illness and the sheer hell you must be going through, and the only thing I can think of to say is that your own determination to not let this beat you down makes me all the more determined to use my own minor chronic ailment as a muse to continue writing stuff that entertains you. Seriously. I would jam a sharpened knitting needle into my big toe if I thought it would relieve your own malaise for a few minutes.

    OW! FUCK! I didn’t…FINE! FINE!

    (See, I didn’t actually have to jam the knitting needle in…because GOD did it to me…)

    Glad I got to hug you yesterday.

    Bojack Horseman! Lady Dynamite!

    I got nothing else…

    Always, JSB

    • Carrie Kellenberger

      Please tell me you did not stab yourself with a sharpened knitting needle! How can you tell tales of travel madness with one less toe?

      You always have something else. That is the magic of spinning words and karma, right? You excel at that, JSB.

      You and Twi know how to hug. Always accepted!

  • Christina Lowe

    You are amazing, brave, beautiful, and so full of courage. I am so deeply honored to know you. I often reflect on the things I lose, with each new diagnosis, and it’s hard, it hurts, because it’s things we love. It’s the things that people take for granted, it’s our hobbies, or passions as well as our basic human requirements, like washing our hair. We are the unique though, because through it all, we can still find the good. We grieve like everyone does, but we don’t stay there, we know that we have to keep going. Finding the positives in our negative situations, changing our perspective to maintain our happiness. Knowing we can’t control but so much of our outward/ internal situation but we can change our mind’s and how we deal with it. You are my hero. I am so grateful to have you in my life. ❤XOXO

  • Elias Ek

    Hi Carrie,

    Like you say, I’ll never understand unless I have your sickness, but I am learning something new through your posts. Hopefully that will help me avoid being an ass to someone by doing some of the things you describe above. Thanks for that!


  • Kim Stocking

    Hey Carrie. After I read your post last week about your Dad, I’ve been thinking a lot about you. Then I read this and I knew I had to reach out to you. Im very sorry to hear about your illness and how hard you are battling. I also fight everyday with similar challenges that have impacted me greatly. I teach part-time and have learned to maximize what I can accomplish on the good days. You are in my thoughts dear Carrie.

    • Carrie Kellenberger

      I am so sorry to hear that, Kim. How are you coping? Pacing and management are hard lessons to learn. I don’t think I’ve quite figured out how to maximize what I need to do on good days because I always overdo it and end up back in bed. I have tried many times to revert to ‘interval training’- that valuable lesson we all learned in high school, but my body won’t work with it. It doesn’t seem to matter if I build on my activity levels or not, it’s always the same result. I have an end point and I need to be vigilant about stopping once I’ve hit it. Thinking of you and hoping you are doing well, Kim! xo

  • Sherry

    This is sooo me! Everyday, everynight. I am a singlemom and donot know where to start because I cannot stop working. It hurts to breathe each morning I wake up. It hurts everywhere all day and worse when I sit down to rest. I donot want to be “pilled up” so I stopped seeing my RA Dr many years ago..( that and I didnt have insurance ans couldnt afford it).

    • Carrie Kellenberger

      Hi Sherry, I am so sorry to hear that. I’m the same. I use a pain journal to track my pain to show my doctors when I see them every three weeks so they have an idea of what’s going on from day to day. The app I use is called Manage My Pain Pro. I totally understand about stopping work. I have been holding on now for years, but it is affecting my health so badly now, I know in my heart that the best thing to do right now is stop for a while and hope I can get some of my strength back. I have been running on ’empty’ for a while.

  • Rio

    I’m sorry to hear of your struggles with chronic illness. I always think we take our health for granted until we get sick. Chronic illness is a hard thing to live. As someone with Ulcerative Colitis, Fibromyalgia, Anaemia, and a ton of other digestive issues I can relate to a lot of these.

    Thank you for sharing though!

    Rio | Opposite Tourists

    • Carrie Kellenberger

      Thank you so much for stopping by, Rio. Yes, I agree. Everyone takes their health for granted until it’s gone. Chronic illness is very hard to live with, but I’m feeling a little more comfortable with it now than I was 10 years ago when I received my diagnosis. I’ve made it work by listening to my body, accepting my limitations, and changing the focus of what I used to do to activities that are more manageable for me to do when I’m housebound.

  • Claire

    I relate to so many of these points Carrie. It’s a hard life in so many ways, and so few understand. My cat is currently sitting next to me and looks exactly like yours does – imitating how I often feel.

  • Meara

    I’m 27, and I started using a mobility aid last year. I was bed bound at age 26. When I married my husband, he became angered at the notion of becoming my caregiver. I fee all of this, and I strive to see the beauty of it all. The pain we have all suffered does have some meaning somehow.

  • Shruti Chopra

    At the end of it all and you write: “THAT I DONT MIND THE PERSON I HAVE BECOME THROUGHOUT ALL OF THIS BECAUSE IT HAS MADE ME STRONGER. ” – I connected with this line straight away.

    I can completely understand not minding the people we become because somehow we learn so much about our mental and physical capabilities – frankly, none of use wanted to learn this but we have and despite you having missing out on all the things you’ve listed, which can never be replaced you’ve managed to keep yourself going by exploring all these other talents you have – whether it’s writing, handling plants… you’ve not stopped exploring yourself and that such an amazing learning you give to all of us. 🙂

    • Carrie Kellenberger

      I think it’s a good reminder that we can go through so many horrible things and still come out of it better and stronger than before. I hope people read until the end for that message. I’m glad you did. That was the whole point of the post. 🙂 Sending spoons.

    • Carrie Kellenberger

      It really is! Yes, people keep telling me that so I’ve turned it into a bit of a secret weapon and drop my age when someone is being condescending. Last week I had a really horrible hot flash at a women’s luncheon and excused myself for a bit. When I came back, I was really wet and red in the face and just mentioned hot flash, and this woman started laughing at me. “Um, hello, I’m serious! I’m in perimenopause.” She thought that was impossible, so I told her I’m 45 and some women start in the 30s. Never judge a book blah blah blah.

      She was so embarrassed, but it was a good moment for opening up a talk at the table about when this happens and how it happens. I’m amazed that women don’t talk more about this.

  • Lucy

    Thank you for sharing this. I can relate to every single point you made. We really don’t realise how precious our health is until we lose it and it’s something I completely took for granted. Life certainly looks completely different to how I imagined it would but like you said it teaches you some really important life lessons and the importance of rest and enjoying the slower life.

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