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

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

I wrote 70 things about my invisible illness that you might not know in 2015 to give people an idea of some of the things that happen in my life that no one sees. I’m so glad that this article seems to resonate with my readers, and I try to keep it updated each year.

The first part is a quick update for 2020 about my current health situation. Below that, you’ll find my list of 70 things. What would you add?

Invisible Disabilities Awareness
Learning About Invisible Disabilities with Carrie at MySeveralWorlds. Learn more about how patients live with Invisible Disabilities and why we need more awareness.

DECEMBER 2020 QUICK INVISIBLE ILLNESS UPDATE

I started Enbrel in November 2018 and while no medication is perfect, I’ve responded fairly well to this medication. It has kept me out of my wheelchair.

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 struggling to keep my step count above 2,000 steps a day. My average is between 2,000 to 3,000 steps per day. Anything more than that tends to cause a PEM crash. (Post Exhertional Malaise from too much activity.)


This hasn’t changed since 2017 after I weaned off Prednisone. Prednisone made me very sick and put me into adrenal fatigue.

Now that I’ve been with my current rheumatoligist for two years and he has observed me on Enbrel, we have started the petition process to get health care coverage for Enbrel, which I’m paying for out of pocket. Right now, I’m spending NT$30,000 a month (approximately $1,000US) on my arthritis medications.

Patients should not have to go through things like stopping their medications when they have 13+ years of medical history in Taiwan. Yet that is what I was asked to do. I caused harm to myself by stopping the medications I’ve been on since 2009 in order to prove to Taiwan’s National Healthcare Institute that I’m sick and need these medications desperately.

This is a cruel thing to do to a patient. Read more about that process here.

What Happens When You Stop Taking Your Meds Cold Turkey


Since I started raising awareness for Ankylosing Spondylitis and autoimmune-related illnesses on April 1st 2014 some 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
  • I’m advocating for several North American organizations and I’m still looking for Taiwan organizations that might find my work helpful in reaching more patients here
  • 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!
Chronic illness: When the goal is to maintain what you have instead of focusing on being cured. Stability is key! ~Carrie, My Several Worlds Click To Tweet

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.

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. ~Carrie, My Several Worlds Click To Tweet

I started using a wheelchair on and off in 2009 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.

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.~ Carrie, My Several Worlds Click To Tweet

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.
  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
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.
READ:  How Do I Describe Chronic Pain to My Doctor?

My last ten tips for this post are here:

Suggestions for people who want to help someone living with chronic pain
How To Be a Friend to Someone Living with Chronic Pain

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.


Here are some other posts on this topic that might interest you if you’re new to this site: 

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.

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

17 thoughts on “70 Facts About My Invisible Illness You Might Not Know [UPDATED DEC 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?

    Claire

    (May 27, 2020 - 8:18 pm)

    Really relate to pain affecting more than your body – it’s really all-encompassing in our lives isn’t it. You are doing so amazingly navigating this, particularly in another country!

      Carrie Kellenberger

      (May 28, 2020 - 5:33 pm)

      Thank you so much, Claire. I can’t say I ever thought I’d be navigating a health system in Chinese, but no one believed I was sick in Canada. I’m forever grateful to Taiwan doctors for believing me and for giving me a firm diagnosis. Just knowing that it’s not in my head was such a huge relief.

    Samantha DeCosmo

    (May 27, 2020 - 8:30 pm)

    Thank you for sharing this and for being so honest. I’ve suffered from chronic pain for over 16 years so I can relate to this. Thanks for also mentioning medical PTSD, it’s something that I’m just starting to explore after going 16 years without a diagnosis.

      Carrie Kellenberger

      (May 28, 2020 - 5:32 pm)

      I’m really trying to bring more awareness to medical PTSD. It’s so stigmatized right now, and yet most of my friends who are chronically ill have a diagnosis! I think we’re going to be seeing a lot more about medical PTSD in coming years, especially with the pandemic. At Christmas, I contacted the PTSD Association of Canada to find out how they assist patients with medical PTSD. Their reply was that they don’t really assist them. They focus on first responders and trauma victims. I was so surprised that Canada is leaving out such a huge part of the population with this. Every group I’m in for Spondylitis and Fibro acknowledges PTSD and how being so sick for so long contributes to it. I’d really like to see more awareness about it. The more we speak out, the more light we can shed on a part of life that is huge for many of us, but that gets little to no attention or acknowledgement outside our immediate community.

    Claire

    (January 9, 2021 - 8:20 pm)

    The one (amongst many to be honest) that stood out for me was how hard it is to say no to things. Don’t we wish we could say yes all the time, to invites, activities or just a casual wander around the shops. But many times our bodies force us to say no and it isn’t ever a pleasant thing to say.

      Carrie Kellenberger

      (January 11, 2021 - 3:38 pm)

      I feel like NO is my favorite word now! I’ve gotten much better at it and typically just say thanks for remembering to invite me and I’ll come if I can. But usually that almost always means me not going.

    Katie Clark

    (January 11, 2021 - 7:59 am)

    The average person sees 70 things and must think what?! Impossible! But, we get it. Most don’t have just one chronic illness. AS, though, really is scary. I sure hope you can get the meds you need covered through your health care to keep you as much out of the wheel chair as possible. When do you go back for a re-look? What exactly are they looking for that they haven’t yet seen in the past 2? 3? months?

      Carrie Kellenberger

      (January 11, 2021 - 3:37 pm)

      Katie, I haven’t written about it yet. I’ve been really depressed. They denied me for coverage. I wasn’t able to provide enough visual proof of my invisible arthritis and I found out on Jan 31st. Plus my friend died and it has just been a horrible few months. I’m re-grouping now. I know I need to go back off my meds if I want to submit a second petition. I can do that in six months, but right now I’ve done everything for nothing and have to commit to continue finding ways to bring money in to cover my meds. They ignored 13 years of meticulous notes from my doctors and myself, as well as 13 years of MRIs, x-rays, and blood tests – all showing constant inflammation and a spine that is getting worse every year. I don’t really know what to do right now, which is why I haven’t been super active online. I was chatting with another AS patient here last night and she said the same thing. It’s like they don’t care until it gets so bad, you’re completely disabled.

    Alison Hayes

    (January 12, 2021 - 8:11 am)

    Carrie,
    That’s a lot to share and a lot to experience. Your posts not only strike a chord with me, but also help me better understand my partner and his health situation. He’s got chronic pain from shattering his acetebulum, which was caused by autoimmune pernicious anemia(a blood disorder). He’s been fortunate enough not to have additional issues(so far at least) and I’m just enjoying what I can. Your posts never cease to educate and impress upon me how much there is out there to understand.
    I’m so very sorry that the health system is making you go off your medications, but glad that so far it’s led towards your treatment being covered. I agree that it sounds like a cruel and unusual punishment and shouldn’t be allowed.

      Carrie Kellenberger

      (January 14, 2021 - 2:11 pm)

      Thanks so much for your positive comments and for just being you, Alison! I really appreciate it more than you know. I lost my petition. At the very last stage they threw a curveball at me and asked me for photos (visual proof) of my invisible arthritis. We are just gobsmacked.

      I’ve since found two other patients who have been asked to do the same thing – go off their meds and petition, so now I’ve got a case and that will be my project for 2021. Blowing the doors wide open on a medical system that doesn’t take the Hippocratic Oath seriously to do no harm. So I’m still paying $1,200 a month and that’s breaking me as much as the arthritis is. Thanks for always having my back!

    Sheryl Chan

    (January 17, 2021 - 3:26 am)

    Just about everything was so relatable despite having a different mix of chronic illnesses. Thank you for writing this post it helps a lot with raising more awareness and knowledge!

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