70 Facts About My Invisible Illness You Might Not Know [UPDATED 2020]

Carrie Kellenberger - Ankylosing Spondylitis - Invisible Illness - 70 Facts To Know

FEBRUARY 2020 INVISIBLE ILLNESS UPDATECarrie Kellenberger Standing Tall for AS

I’m still on Enbrel. I started this treatment in November 2018. We’re now wondering how effective it is. It has kept me out of my wheelchair, but I’m having some medication side effects that are worrisome.

Enbrel is a TNF blocker (tumor necrosis factor) that treats inflammatory conditions by reducing inflammation and stopping disease progression. It works by blocking TNF, a chemical produced by the immune system that causes inflammation.

Enbrel has made me less reliant on my wheelchair. I’m still hovering around the same step count – 1,000 to 3,000 steps per day.

I’m still struggling to keep my step count above 1,000 steps a day. 


Since I started raising awareness for Ankylosing Spondylitis and autoimmune-related illnesses on April 1st, 2014 some pretty amazing things have happened (to me):

  • My posts about AS Awareness have reached readers all over the world
  • My posts have connected me with dozens of other people in Taiwan that have AS
  • Most importantly – for me – I am now at Tzu Chi Buddhist Hospital, where I am receiving better care than I was at my previous hospitals
  • This article has been shared thousands of times. Thank you for supporting me!

[bctt tweet=”Chronic illness: When the goal is to maintain what you have instead of focusing on being cured. Stability is key! ” username=”globetrotteri”]

Autoimmune illnesses have been on the rise over the last 100 years. Most of them are labeled as invisible illnesses, which means you can’t really tell that a person is sick just by looking at them.

[bctt tweet=”Many of us struggle to be heard with invisible illness. We struggle to be believed and to receive the support we need to live our lives.” username=”globetrotteri”]

I started using a wheelchair on and off in 2011 when I was experiencing massive joint inflammation. I’ve used a cane since 2009. For simplicity’s sake, I’ve broken down these facts into readable sections. If you’re interested in learning more about chronic invisible illness or about what I go through on a regular day, read on.

[bctt tweet=”I don’t write or post about my chronic illness to gain sympathy or attention. I write to bring these issues into the public eye.” username=”globetrotteri”]

FACTS ABOUT MY CHRONIC INVISIBLE ILLNESS

  1. Many people think I only have Ankylosing Spondylitis, but autoimmune illnesses tend to form groups. If you have one, you will likely develop another. I also have fibromyalgia, and I suffer from ME (Chronic Fatigue Syndrome) and chronic ear infections and skin rashes. Doctors added severe IBS in 2017. We are controlling this with meds and a strict diet right now. I’m also pre-diabetic.
  2. I was diagnosed in 2009 but I was presenting symptoms in 1999.
  3. I have been sick for as long as I can remember. I have always had aches, pains, fevers, rashes and infections that couldn’t be explained.
  4. Most people think I’m happy and upbeat, but that is the old Carrie. She’s still there from time to time, but I don’t see her much anymore.
  5. Living with a chronic illness is the hardest thing I’ve ever done. Some days I’m strong, but most days are a struggle to get through.
  6. Some days I don’t leave my bed or couch. Some days I can’t even sit up to eat. At times, I’ve spent several days in bed because I don’t have the energy to move or because I hurt too much.
  7. I suffer from autoimmune fatigue all the time. Imagine how you feel on the worst day of having the flu. That’s how I feel most of the time. My body is so busy fighting the pain and inflammation, I don’t have energy left for anything else.
  8. Mornings and late evenings are hard for me. It can take 2-3 hours for the pain and stiffness to subside and for me to get moving. I do feel better once I get moving, but I have to watch how much I do. If I overdo things, that makes me much worse. At night, I often cry myself to sleep because I can’t get my body to relax.
  9. I take more than 15 pills and supplements a day to manage my condition. I started injection therapy in November 2018. I don’t like to inject, but one positive is that I’m not taking as many pills now.
  10. Some of the drugs that I take to manage my condition are used to treat cancer patients. Most of them come with horrible side effects.
  11. AS and Fibromyalgia are rated on the McGill Pain Index as extremely painful diseases. The pain associated with these diseases comes very close to the pain experienced with childbirth. The main thing to remember is that childbirth doesn’t last forever, but you can look forward to a lifetime of unending pain with Fibro, ME, and AS. McGill Pain Index
  12. Some days are better than others, but just because I’m smiling doesn’t mean I’m not in pain. I’m a great pretender.
  13. One of the hardest things for me to accept is that I never know how I’m going to be feeling or when a flare will hit.
  14. I miss being able to run, jump, and dance. As of November 2016, I haven’t been able to do more than 22 minutes of walking or standing at a time.
  15. Gentle exercise and activity is good for people with AS. Walking helps. Contact sports definitely don’t help.
  16. It is really easy for me to overdo things. Anything over 22 minutes in one go will land me in bed for a few days afterwards.
  17. This is my new normal. I’ll never be the person I was 10 years ago, but I’m still me deep down inside.
  18. It has been hard to give up my independence and to accept that I need help most days.
  19. It’s hard for me to say no or accept my limitations.
  20. Having a chronic illness is very lonely and isolating.
  21. Everyone thinks I’m strong, but I’m not. I wallow in self-pity a lot. I retreat into a cocoon when things are really bad. When you’re in pain and there is no end in sight, all you can think about is how to ease your pain and when it will end. There is nothing else.
  22. I suffer from brain fog and often lose my train of thought. I get around this by writing everything down.
  23. I also suffer extreme anxiety and depression because of the drugs and their side effects.
  24. Depression is a real danger for me. Sometimes I can’t see the light at the end of the tunnel. On really bad days, I think about dying. Medical PTSD is real and we’re starting to see more awareness for patients who suffer from it, but it’s not really addressed much.
  25. Nothing else matters if you don’t have your health. 

FACTS ABOUT ANKYLOSING SPONDYLITIS (AS)

  1. Ankylosing Spondylitis is not old-age arthritis. It’s autoimmune arthritis. It is now called axial spondyloarthritis (Axial SpA), which is an umbrella term that includes Ankylosing Spondylitis (AS). AS can be seen on x-rays. Doctors can see visible changes to the SI joints or spine. (This is how I was diagnosed in 2009.) Non-radiographic axial spondyloarthritis means that changes in x-rays are not present, but inflammation is visible on MRI or you have other symptoms. Around 7 in 10 patients have non-radiographic Axial SpA with visible inflammation in the sacroiliac joints or the spine when an MRI of the back is carried out. These two diseases are the same thing. They just present a little differently. Check the NASS website for a full explanation of Axial SpA.
  2. An autoimmune disease is one in which the body’s immune system mistakenly attacks normal cells.Invisible Illness
  3. There are many types of autoimmune arthritis. You are probably most familiar with rheumatoid arthritis (RA), which happens when the immune system attacks the lining of the joints. This leads to inflammation that can affect the entire body.
  4. AS is very similar to Rheumatoid Arthritis.
  5. AS and RA are crippling and disabling.
  6. AS is arthritis of the spine that strikes young people, typically between the ages of 17 and 35.
  7. AS also affects children. The youngest patient I know is nine years old. She has Juvenile Ankylosing Spondylitis.
  8. Akylosis means fusion, which may be fibrous or bony. Spondylitis means inflammation of the spine.
  9. AS is not a rare disease. It is more prevalent than Rheumatoid Arthritis, Multiple Sclerosis (MS), Cystic Fibrosis (CF) and Lou Gehrig’s Disease (ALS).
  10. Approximately 1 in 100 Americans have AS.
  11. AS is difficult to diagnose in the early stages. It is the most overlooked cause of persistent back pain in young adults.
  12. The hallmark feature of AS is the involvement of the sacroiliac (SI) joints. My doctors were able to diagnose me with AS because they could clearly see inflammation in my SI joints on my x-rays. My doctor traced an outline on my x-ray for me and said, this is what AS looks like when it’s active.
  13. The average number of years it takes for a patient to be diagnosed with AS is 10 years.
  14.  AS is a systemic and chronic inflammatory disease of unknown origin. It attacks your whole body.
  15. AS causes severe chronic pain, discomfort, and spinal stiffness.
  16. AS can damage other joints in your body, such as the hips, shoulders, knees, elbows, feet and hands. It also hits your eyes, bowels, heart, and lungs. Besides the joints, manifestations of ankylosing spondylitis typically involve the eyes — with uveitis, which presents as acute eye pain, blurred vision, and sensitivity to light
  17. Frequent gastrointestinal infections can occur with AS.
  18. Almost all cases of AS are characterized by painful episodes known as flares. Flares are followed by periods of remission where symptoms subside.Ankylosing Spondylitis
  19. AS flares can last for months or even years.
  20. Pain sufferers often are misdiagnosed, misunderstood and miserable.
  21. Inflammation from AS can cause new bone formation on the spine, which causes the spine to fuse together.
  22. In severe cases of AS, the spine fuses in a forward-stooped posture. This is why AS is also called Bamboo Spine Disease.
  23. Ankylosing spondylitis can be blamed for a “hunchback” appearance.
  24. The exact cause of AS is unknown, but genetics plays a key role in AS. So does environment.
  25. There is no cure for AS.

Things that people get wrong about Ankylosing Spondylitis

Things that people get wrong about Ankylosing Spondylitis
A chart of misconceptions or things that people get wrong about Ankylosing Spondylitis.

FACTS ABOUT CHRONIC PAIN AND FATIGUE

  1. Chronic pain is defined as any pain that lasts more than 12 weeks. Acute pain is a normal sensation that lets us know we’re injured. Chronic pain can be acute pain and it can persist for months or even longer.
  2. Chronic pain is the number one cause of adult disability in the US.
  3. Chronic pain places an emotional and financial burden on patients and on their families and caregivers.
  4. A patient’s unrelieved chronic pain problems often result in an inability to work and maintain health insurance.
  5. A recent Institute of Medicine Report states that pain is a significant public health problem that costs at least $560-$635 billion annually.
  6. Pain, especially chronic pain, affects more than your body. It’s psychologically stressful and can lead to emotions like anger, frustration, and suicidal thoughts.
  7. Pain and stress are  a vicious circle: Pain increases stress levels, and stress can make pain worse. This can cause depression and make it difficult to concentrate.
  8. Chronic pain not only hurts, it also causes isolation and depression.
  9. Chronic pain is a challenge to treat because it is not understood well.
  10.  Chronic pain is devastating. It damages productive lives and tears families apart.

WHAT YOU CAN DO TO HELP A FRIEND WHO IS SUFFERING FROM A CHRONIC ILLNESS LIKE AS

If you know someone who is in chronic pain, you probably want to help. Many people aren’t sure how to go about it, and sometimes a general offer of ‘Let me know what I can do’, isn’t enough. There are ways to show that you care though.

  1. Offer to come and visit. Just because your friend can’t get to you doesn’t mean she doesn’t want company. Don’t be offended if she says she doesn’t want visitors. Some people, especially me, don’t want others to witness their pain. I often say no to visitors in my home because I feel like I have to entertain them. My home is the one place I don’t have to work at putting a smile on my face when I’m in pain.
  2. Don’t tell your friend that you know how it feels. Suffering from the flu, having a broken leg, or dealing with a bad back don’t compare to what your friend is going through. In fact, your friend might be feeling like she has all three.
  3. If you don’t understand your friend’s condition, ask her questions. She would rather tell you than have you ‘think’ you know what’s going on.
  4. Don’t give unsolicited advice about her health. Don’t wait to be asked for help. If you want to help, just do it. Drop by with some food or offer to help change the bed or clean up.
  5. Offer to take her to the hospital and sit through appointments with her.
  6. Don’t stop inviting your friend to events because you think s/he might be offended by your invites.
  7. Don’t tell your friend that she doesn’t look sick. (Nothing invalidates us more than having someone tell us we look great when we feel like we’re dying.)
  8. Try not to let your friend know that you feel uncomfortable around her. She is probably already aware of this. No one likes being around sick people.
  9. Show your friend that you support her by learning about her disease.
  10. Slow down and walk at your friend’s pace.

Please feel free to reach out and let me know if I’ve missed any facts for this post. I’d love to hear from you.


I bought a wheelchair in late 2017 because my mobility has been compromised by comorbidities like fibromyalgia, MECFS and severe IBS that have caused severe weakness and a lot of extra pain and fatigue.
I’m walking when I can and using my wheelchair when I hit 3,000 steps.

Here are a few posts I’ve written since I got my last diagnosis in February 2017 and when I last updated this article: 

Alternative Treatments To Chronic Illness: Do They Work?

Chronic Illness – Never Did I Ever Think…

Clearing Out: Letting Go Doesn’t Mean Giving Up

Chronic Fatigue Syndrome (ME) – Millions Missing – Recent studies show that 1 in 130 individuals are suffering from MECFS. This is not a rare disease. It is a disease that doesn’t get any attention or research money. This is changing as medical organizations and governments around the world are starting to realize just how many people are affected by it and how disabling it is.

 

 

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

6 thoughts on “70 Facts About My Invisible Illness You Might Not Know [UPDATED 2020]

    Jed Finley

    (May 2, 2015 - 1:54 pm)

    Thanks for this post. As a certified ESL teacher and an AS sufferer for 22 years your blog is an amazing find. I shall share this post with EVERYONE!

      Carrie Kellenberger

      (May 2, 2015 - 2:11 pm)

      Thanks, Jed. That is so great to hear. Are you living abroad and teaching at the moment?

    coastanoan

    (September 15, 2017 - 1:18 pm)

    hi, just reading your blog because of my interest in Taiwan as a future destination, and then kept reading about your condition. sounds terrible… I struggled with late stage chronic lyme disease for 6 years before finally getting diagnosed. I learned much about all the ways lyme disease can manifest. you’ve got a very complex picture of health and I don’t want to presume I know really anything about some of those challenges, but I have to ask… were you ever tested for lyme disease…? I know it can masquerade as fibromyalgia, arthritis, autoimmune diseases, chronic fatigue etc etc… I personally know people who were diagnosed with these things before they got a lyme diagnosis which tied together all the mysterious puzzle pieces into something that made more sense. I just know there is a lot of misinformation about lyme disease and people would tell me it didn’t exist in California where I was bit by many ticks during my backpacking days. I just thought, for what its worth, I wanted to share this with you, as a possibility that is definitely worth checking into if you haven’t already. best to you, and congratulations on living out in the world regardless of what you face day to day. -gabe

      Carrie Kellenberger

      (September 25, 2017 - 3:16 pm)

      Hi Gabe. That is a really interesting question. How interesting that people told you in California that Lyme didn’t exist there! I have a similar story with Taiwan. I have asked many times about Lyme and been told many times in Taiwan – wait for it – just wait for it – THAT THERE ARE NO TICKS IN TAIWAN! I have been told this by two ‘experts’, who I left promptly, because ticks are everywhere and no one knows what those ticks in Taiwan are carrying. Two summers ago (August 2015), there was a huge outbreak of dengue fever and the government was warning people not to go into grassy areas with mosquitos and ticks. Apparently rheumatologists in Taiwan did not read that news.

      I’m not sure how to go about getting a Lyme test in Taiwan, but I have tried and asked about it many times. Here is an article directly talking about Lyme Disease in Taiwan. I guess a lot of folks missed this too. http://www.cdc.gov.tw/english/info.aspx?treeid=e79c7a9e1e9b1cdf&nowtreeid=e02c24f0dacdd729&tid=894797FF582735DE

      The consequences here, I suppose, are the same consequences Canadians and Americans are facing. Health insurance doesn’t cover the tests or treatments for Lyme Disease. The tests are extremely expensive, as are the treatments. I am so sorry you are dealing with late-stage Lyme. I have many friends that have late-stage Lyme. Many of those friends were originally in a private support group for other autoimmune issues that they had been diagnosed with before they figured out they had Lyme. I hope you are able to find some relief and some success with your treatments, Gabe.

    Sheryl

    (May 10, 2018 - 2:04 am)

    I’m glad you’re receiving better care, and impressed that you’re still so active with the advocacy groups!

    P.s. I’d be really interested to interview you someday, if that is something that you’d be interested in too! I’ve always been fascinated at how you manage such devastating conditions while working in another country! I believe quite a number of other spoonies have this desire too, and would love to hear how you do it! 🙂

      Carrie Kellenberger

      (May 11, 2018 - 6:27 pm)

      Hi Sheryl! Thank you so much for stopping by to read again. I have lots of time at home, so I use that time to post in advocacy groups and write. (And arrange flowers, as you already know.)

      I’d love to interview with you. How would you like to set it up?

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