#sickbody, ankylosing spondylitis, chronic disease, chronic pain, disability, health, Invisible disease, open letter, sickness, spondylitis, spondyloarthritis

An open letter to healthy people from a former healthy person

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Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic immune-mediated inflammatory joint disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

I am watching myself transform from a healthy, young, active, invincible woman to a sick, grumpy, defeated, disabled, immobile, needy person. I know what it’s like on both sides now – I’m on top of the fence. I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, definitely, but the other side of the fence is perpetually somewhere I’ve already been and can never return. My fence is a prison wall and I have multiple life sentences. I’m not getting out of this alive. It’s all downhill from here, you better believe it. Happy birthday, here’s another pain pill. Ready for narcotics yet? What about steroids? How’s your infusion this month? Oops, those side effects really took about a week of functioning from you, let’s try a new drug before that last one leaves your system and hope for the best.  We’re playing the medication dart board: bull’s eye on that last drug cocktail!

I can see it now, I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.

How terrifying to become something we’re all afraid of.

I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing? I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up. People have cancer, for crying out loud, you don’t matter as much. Big brother is watching and you don’t look sick and you’re too young for disability, why don’t you leave that for the people who really deserve it. Suck it up and go find a job (you’ll be dead in ten years).    (Here’s a picture showing how I feel about that)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas…

Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us.

We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?

Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit too frequently. Home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. Home is where the heart is – broken and beating frantically in our throats during the MRI results. Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, or waiting in long lines for urgent care or a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects.  Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.

We, the people, fight in elections for our own versions of political and social progress while we, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of our precious sickbodies. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis and spasms and 28-years-old-turning-74-next-month. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of  witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.

We are not strong, we are not admirable, we are not role models because we woke up and chose to be.  We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior.  What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

Be with us. Remain with us. We were once leaders, friends, professionals. We did not change, our bodies did. We are leaders, friends, professionals. We are sickbodies, and we’re here until we’re gone.

Love us.

To learn more about Ankylosing Spondylitis, check out the Spondylitis Association of America website.

 

 

 

If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on and make me smile.

188 thoughts on “An open letter to healthy people from a former healthy person”

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    1. No words to add but that your words ring like a bell. Keep on. The prison is real. But we hear you, and feel you.

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  5. Wow! Thank you for writing this and for all your posts and stories. At a time when just getting out of bed is difficult and makes me feel defeated it was great to read I am not alone. When I was in my early 20’s every doctor told me I was fine. Young and healthy and just had back spasms or minor degenerative disc disease. I had been an athlete in school and through my 30’s continued to stay healthy and lift weights and keep my body in shape but I had heavy lifting jobs and bad knees and pain in my lumbar spine and just thought I was doing too much. I continued to have tests done and drs continued to tell me there wasn’t anything except some degeneration, (really?? Some degeneration? Is that normal in my now 30’s)?
    At @45years old I had a bout of eye inflammation. Soon after that I was diagnosed with thyroid disease. A year after that I finally had a Rheumatologist and had genetic and HLA-b27 testing done all positive but they still resisted saying AS because my SI joints were not terrible. 2-3 years after that a new Rheumatologist finally agreed and listened even though she still had doubts (really???). Now I have SI jount involvement and am believable. I am now 58 and have been on Enbrel for a number of years and have greatly appreciated your insight and writings on AS. I feel defeated most days because my fatigue is so very overwhelming I do not want to get out of bed. I am on SSD (took me 3 years). I try working p/t and can for a while but then am so spent from pushing myself ti be normal I don’t want to come out of my room.
    My thyroid disease is autoimmune (Hashimotos). My AS is autoimmune. I had severe Endometriosis as well till everything was removed in my 30’s. Now they are saying Osteoarthritis. In need of shoulder replacement and my lumbar spine is jacked up. Cervical is painful every day and causes massive headaches and thoracic just tops it all off (I also had a very bad fall in my late 30’s down an embankment full of boulders, yikes!).
    Anyway, thank you for being you and sharing. This is the first time I have ever shared and/or responded to an article or post

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  6. Enjoyed reading this. I also have A.S. I met you, Charis, at the LOCO relay a few years ago.(I’m Karey’s mom) I was so impressed with your determination! You go girl! Checked that off your list!
    I’ve had A.S. for many years, much undiagnosed and just kept getting worse. Same old story of doctors not believing me for years and years until finally one doc really got it. He said to me, “we are going to pursue this until we get to what the problem is no matter what it takes. I know you’ve gotta have something because I don’t think you like coming here enough to come back so often! You’ve got better things to do with your life”. At that time I was working 10 hour days and it was very difficult to take time to see docs. Finally tested for hlab27. Positive result so then came the x rays and MRI’s. Pos results sent me to a rheumatologist who didn’t really know too much about A.S. but put me on remicade infusions which helped a lot. Unfortunately a few years later I was dx’d with Multiple Sclerosis. Had to be taken off of remicade. I didn’t like that, but nothing I can do. There is now another biological that i can take for A.S. that won’t interfere with the daily injections i give myself for M.S. unfortunately I cannot afford the huge copay. Just waiting for assistance with that. I have all of the phone numbers and websites that help with that and I call them all monthly to find out if any help is now available. So far zero. Hopefully soon. And, it just keeps getting better and better (ha). Now I’m dx’d with advanced osteoporosis of the spine. Osteopenia of other areas. Also torn rotator cuff which may or may not need surgery. Still waiting on that one. Didn’t help that in April as I was stopped at a red light in my van, a young lady slammed into the back of my vehicle without even trying her brakes. Claimed she didn’t see me. It was broad day light and I’m in a van. What? And folks. Don’t kid yourself, whiplash is a real thing. It hurts. And it leads to limited use of arms in my case. And unfortunately for her and her insurance, she hit someone with several body problems which were exacerbated by being hit at full speed like that.
    I tell you all of this to tell you this: I do my best to not let all of this get me down. I finally have good doctors who believe what I say. I have a loving family who treat me the way I want to be treated which is with love, compassion, help when I need it, and let me do what I can still do. They don’t baby me, but they are there for me when I need them.
    My life is not what I thought it would be at age 59, but I’m not fighting these diseases, I’m living with them. Learning to take care of myself, when to push, when to rest. Trying real hard not to resent all of the medication I have to take, but realize it allows me to live better than without it. Trying not to be sad when my sister and my 83 year old mom have more stamina than I do and go on adventures I no longer can do. (Although I have to say they are very considerate planning outings that I’m going on with them. I live in a different state). So, for all of you living with hardships of the body, I sure hope you can find a happy medium in your life and find something meaningful that you can still do. I try to remember, when asked, “how are you doing”?, To answer, “worse than some, better than most” because there is always someone in worse shape than me! Take care all.

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    2. Hi Carla, thank you for sharing what is going on with you and your incredible attitude. I love the ‘worse than some, better than most’, I hope you don’t mind if I use that :-). If you havn’t done so already, perhaps you will consider sharing this at the SAA site http://www.spondylitis.org/Community/Faces-of-AS or on facesofankylosingspondylitis.
      Sending healthy thoughts and prayers your way. Kind regards, Rich

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      1. Hi Rich, yes, you can use my words. I think I got them from my dad who I also got A.S. from! I do belong to SAA, (KarenB) and am pretty sure I’ve shared that before. I haven’t been on that site for awhile, maybe I’ll cruz over there this week. Thank you for your kind words.
        Carla

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  8. Thank you for this powerful, vulnerable and heartbreaking piece. I am not what I used to be but my heart and spirit are changless. Forever strong. Forever loving.

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  11. First of all, I want to thank you for this piece. So bold, expressive, and honest. No pleas for pity (last thing we want anyhow), just the truth. My wife, a R.N. Of 30 years seems to believe I have A.S..

    Twenty five years ago I sustained an injury in the Lumbar region of my spine. Two years ago I finally got someone to do more than throwing pills at me. He fused my L5 disc and put in a steel cage. There were other injuries, but he could only do the very worst one.

    Last weeks MRI showed L2 &L3 with no cartilage between. It’s just degenerative, crumbling discs, bone spur to bone spur. My shoulder and hip joints scream out in pain more now. Tentatively, I’ll be having 3 sets of discs fused with Titanium cages, one shoulder replacement, and possibly something done with my hips.

    You really put yourself out there with that post, giving words to thoughts and feelings I’ve experienced and lived with for so long. God bless you and thank you again. Your words really have me thinking, and sadly realizing there really are people besides me who live every minute of everyday in the 6.5 -9 pain scale range. I’ll be praying for you, as well as all the “silent warriors” who suffer in silence, even though they “don’t LOOK sick” (said with venomous sarcasm). Bless you.

    Man says:
    “Pain DEMANDS to Be Felt”, But,
    what IS pain? I don’t know anymore…
    It’s been so many years now, but…

    What I do know is…..
    that on those “Midnight Blues” days
    Like an acrobat on the high wire
    I hold on, I struggle, I pray….
    and I once again find myself
    Straddling the fine line between
    This thing called…

    Pain and Insanity
    @Mirror_rorriM 2015

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      1. Oh yes. I now well know what I have. I damaged L3, L4 about 2006. Just that IVIG and IV ABX took the symptoms away. One surgeon told me to come back when the Lyme was gone and he would fuse L3 and L4. At least he knew about Lyme, amazing! I think it was weak infected discs, not herniated that collapsed when I unknowing, stupidly lifted things too heavy. On IV ABX and IVIG the discs got stronger. I remember in one session of IVIG, I mean in 3-4 hours. Went into the IVIG lab with a hurting weak back and feet so swollen they hurt in my very tight shoes. That is what I do know, that recovery seemed to happen in that 3-4 hour IVIG session. Walked out with a seemingly strong back and my shoes falling off. Conventional medicine will not let me have back the IVIG treatment.

        If I am careful, take bone supplements and herbs. I do not great but OK. I can walk, etc. But I am careful now, don’t lift heavy things. On Lyme treatments (IV ABX, plus other medicines and supplements), I did fine about 7 years. Too busy to research enough at the time, I relapsed when IV ABX treatment was jerked. Then oral infections (where the infection was hiding that ABX could not reach during treatment, began, about 2009 (Repetitive, sorryl.).

        I had 2 oral surgeries, lots of it in the last few months. Last surgery 2 1/2 hours artistic work. Problem. Surgery will not work; the infections only gets worse and spreads. I had only a knife ridge of bone left in upper jaw. Bone implants because there was almost no bone in the upper jaw are getting infected. I had DNA tissue tests from gum/tooth/jaw, tissue from surgery. The tests exposed all the classic Lyme infections (genus of Borrelia, Babesia, Bartonella, Erchlecia, with more than one species of each).

        With a weakened immune system for probably decades, if not a lifetime of undetected Lyme, I have other serious infections, not just Lyme, that showed up in the DNA tests.

        The expensive dentists ($13K to $15K) only wanted to operate, not test for pathogens. I found a superb office of dentists/dental surgeons, less than $2k, who did not damage any nerves, or even leave any bruising. I paid extra for the DNA tests, about $1,500. I have spent $3,150 so far on dentists and testing. I will spend more on some treatments that I hope work, but not $13K-$15K before I know if treatments work, help or no use. These tests include GUT tissue tests for which I have not received results yet. I do not know what will show up. Conventional doctors want to ignore the DNA tests. My PCP said this was all over his head. Surprising? Not really. Doctors are not taught to think out of the box as I was taught to do as an engineer. Most have been brainwashed in medical and dental schools. My PCP also said he was not allowed to go out of the box by insurance companies. It is a lot more than insurance companies that will punish him if he does try to “find the cause.”

        The dental/oral connection is so important, and not detected by most even alternative, holistic, Lyme doctors, or dentists. I have learned I am not unique among Lyme victims. Lyme and other infections hide deep in gums/teeth/jaw bones is an easy hiding spot. Testing must be done of tissues as they will not show up in saliva or blood. Those tests came back so positive, which gives me a better idea of what to do. At this point, i dictate my treatment and my tests. I have come to trust few professionals as they have ALL failed.

        I am learning about homeopathic medicine. Like all other professionals, they want a lot of money for their “sure” solutions/cures. As with other professionals, the excuse is that they spent so much on their education, like it is my responsibility to pay their bills. I will find inexpensive ways to test homeopathy. I am not sure what I think about homeopathy, currently. I will find less expensive methods to test homeopathy. I will not let “professionals” take everything, which is precious little. I do have children who need even a small inheritance. If it is going to kill me, then let it go ahead without letting medicine have every last penny.

        When susceptible (genetic, severity of victor bite, or whatever) Lyme victims become chronic, which is usually only a few weeks to months with Lyme, establishment medicine either will not diagnose or treat, or they misdiagnose and take every penny we have and then desert us to leave us to continue to suffer and die with no further treatment.

        I will dictate how much they get, and what treatment I get from now on. I will not let them have the last penny that belongs to my children. My dentists were great, but it is not their fault that I have all these infections that they cannot see, and testing has exposed a lot my chronic pathogens. The dentists were quite surprised by the test results. I have done tons of research, and now tests, not cheap, but not $15k either. Some conventional doctors, if not all, want to ignore the tests. After all, conventional medicine treats is symptoms, not causes. I do not know i all by any means, but I keep researching and trying.

        Medicine is lazy and like to diagnose syndromes. Syndromes just means establishment medicine is too lazy, or frankly to dumb, to figure out the cause. Want to make most establishment medical doctors angry. Just as them the cause. I have had them get angry and abusive on the spot, many times now. They hate that question. They do not want to figure out the cause. They will not think outside the box. Actually doctors are punished if they do try to think outside the box.

        Even Lou Gehrig thought he had an infection, but not even the Mayo Clinic would try to find the cause. They just told him he would die. See https://www.lymedisease.org/372/ Even Doctor Martz is still afraid, either because of his training, or whatever, to say much against establishment medicine. He says they will come along. After what I have been through and what I see others going through, I doubt it. This is in all “western” medicine throughout the world, not just the US.

        I apologize for the long reply. I hope I have not offended.

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  12. Reading this made me cry. No. Made me bawl my eyes out, but not in sadness or anger. It was because like you I am a 27 year old woman with AS and it’s felt like a prison sentence ever since I was diagnosed a few years back. I felt overwhelmed but relieved to know there is someone out there who feels how I feel, but could put it into words. I look back ato pictures of when I was able-bodied and miss it now that I can’t tolerate those things. But you said it perfectly we have to fight that is the only option. We need love and support because it is a lonely world to live in especially when you have AS. It is like the forgotten or unknown disease and you don’t run into people who have AS so it’s refreshing to read something that so eloquently put into words what it’s like to live with AS. Thank you for writing this I needed this more than you ever could have imagined.

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    1. Jenna,

      Thank you for your comment. I am glad my post resonated with you, but I’m sorry for the reason that it did…

      I hope 2016 is being as kind to you as possible.

      Best,
      Charis

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  13. My sister in law linked me to this log. Her husband, my brother, and I both have AS. This made me cry because there is not a lot of understanding about this disease. We look healthy but our bodies are battling against us in so many ways. I am lucky that most of my pain is managed by medicine and exercise and I am still mobile and work. But there are times when I am feeling good and then the next morning I can’t even get out of bed. Sometimes I just hide away on weekends and want to be left to my own suffering. And I know it won’t get any better but eventually get worse. Luckily I have a great support system from my family and friends that know what I am going through. Thank you for writing this blog and from reading all these responses I know that I am not alone.

    Take care and God Bless

    Theresa

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    1. Theresa,

      Thank you for your heartfelt words. What a thing that all three of you have AS – although I’m not surprised since I inherited it from my father.

      Indeed, the harshest reality, I think, is that it will not get better – rather, it will always get worse.

      Keep living as much as you can!

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    2. Hi Theresa, I realize you wrote this comment some time ago. Your reply touched me. Because of my position as staff and support group leader, I’m lucky to talk with people -of all ages- living with spondylitis. I do talk with people that have been living with spondylitis for 5 and 6 decades. Some are feeling miserable and confined. Some are very happy and active. Yes, the disease has caused a lot of issues over the years for people. For me, the pain and limitations have not been linear. Fortunately these past several years have been much better. I’m able to get right out of bed and do things that I couldn’t just 5 years ago. I don’t know what the future holds for me, and that can be worrisome, but there is the possibility of healthy days and joy. We are making strides in research. perhaps in time to benefit us. definitely will benefit our children and grandchildren. Kind regards, Rich

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  19. Hi! I really felt your words, dealing with a type of chronical pain myself. After reading this, I wrote a song based on your words, and I would love to record it!

    Best regards,

    Linn.

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    1. Hi! I so appreciate your comment. Sorry it has taken me half a year to respond…I hope you understand I got so overwhelmed with the great response to this post.

      I would love to read/hear your song – did you get a chance to record it?
      -Charis

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  20. Hi, I am so very sorry, Sweetheart. I want you to know that there are many out here who do understand your experience. I do. And I am so terribly sorry for it, and the isolation that goes with it. Please know that some know. And we accept your life just the way it is. Your life is meaningful. You are a part of us all. We are humbled to know your life is our lives. I’ve been there. On both sides too. You’re not alone.

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    1. Susan,

      Thank you for your kind words. I write from my own experience, but I do not write with the hope that people feel sorry for what I’m going through. I write so that I can spread awareness about the reality we face and so that people feel they have a voice through the invisible nature of what we fight.

      I do appreciate your heartfelt blessing. Thank you.

      Charis

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  21. While I do not have the same disorder, I am sick with other disorders, effects of pain medication and tremors that can render me useless on days. I value this post and it will become a benchmark of hope for me and hopefully others. This “revelatory” comment spoke directly to my soul. The days the pain, whether physical, emotional or both, is intolerable, the noted comments of people who cannot begin to understand, making judgment calls on something and someone that they cannot begin to understand. They have usually not even truly tried. It calls for a deeper reaching into the core of who we choose to be and if we choose to love with such intensity beyond ourselves.

    I am not asking people to build me a castle or make me a saint or give me extraordinary amounts of attention. I just want you to treat me as you used to: as one with personality, likes/dislikes, gifts and vices, fun, hopeful. While I cannot physically race to the mailbox with you I can race to that fence with you in my thoughts, in my memory and in the hope you give me by stepping up to the starting line with me on a measure of equal footing.

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  22. This moved me to tears. I also have a “sickbody” this says, pretty much, everything I feel on a daily basis. I fight my body everyday. When I get up to push my body to limit most do not understand, people have no idea how often I want to give up before I start.

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  24. This didn’t hit home. It slammed it. Both my wife and I suffer from dibilitating “illness” and have run the gamut from disdaining glares to the loss of lifetime friends, to estranged family members.
    They don’t understand our pain and doubt its veracity. They can’t conceive of what losses we’ve sustained and how devastating that is. Not a clue. Just a befuddled or disdainful or indifferent stare. I could go on but it would just devolve into a rant, filled with rage. Won’t do that anymore. Waste of energy and gives me acida.

    I applaud you for your strength and courage and for sharing your post. Maybe some people might learn something from it.

    Namaste.

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  27. I feel like you saw into my soul. So many tears shed reading this. I have Sjogren’s Syndrome, Peripheral Neuropathy and Fibromyalgia as well as a Chairi Malformation of the brain and severe migraines. I first became disabled at the age of 21. I just woke up in agony one day. I never saw this coming. Never thought this would be me. I’m 38 now, and it’s been such a hard journey. I want to tell you it has gotten easier. I can’t. At least not for me. I’ve only gotten sicker and developed more illnesses. So I’ll do the only thing I can do. I’ll keep fighting. And I thank you so much for putting into words what so many of us are feeling. Thank you.

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    1. Carrie, i am so very sorry for what you have been through. Since 21, so young. It once again breaks my heart. At least I got to live most of my life before being continually 24/7 so extremely sick. It sounds so very much like Lyme patients, like me. Have you even seen an LLMD? I was sick for years, given so much prednisone. On prednisone, I always felt sick, sores would not heal, etc. Then finally, felt like I was taking prednisone when I was not taking it. Solution by conventional doctors, more prednisone. That made me worse. Stupid doctors, they finally broke my immune system, so I could not recover. Then called me crazy, a hypochondriac and worse. Then finally I learned a little about Lyme, and where there was a Lyme doctor. Dr. William Traver Harvey, Houston, Texas, was so wonderful (died in 2011). He sent off a urine sample to IGenex for a PCR test. It came back positive. I started treatment. I was worse at first, herxing. He gave me everything I needed. I was back on my feet in a month. It stayed that way, after Dr. Harvey was chased out of Houston by conventional medicine. I finally got another LLMD, and stayed on treatment for 4-5 years, and was normal all that time. Exercised, gained muscle, did well at work and home. Then the 2nd LLMD jerked my treatment, the dog, and I have not been well since. Since I lost my job when my treatment was jerked, I cannot afford treatment any longer so torture 24/7. I have been watching a series of videos that may help me find new hope. See https://www.youtube.com/channel/UCNq-hJHCRtTdodrqHCYc3KA I am watching all his videos. He is so informative. The thing is I was diagnosed with ulcerative colitis, fibromyalgia, scoliosis, chronic fatigue, infected muscles (forget all the so-called scientific names), infected gums and jaw bones, no sleep. I know I can get better. I am hoping you can find hope too. God bless and be with you.

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      1. Have you contacted the manufacturer of the medicine? I was on Humira (for Crohn’s) and my insurance changed and it became too much for me to afford. I called Abbott and they have a program that bills your insurance company and you end up paying $5 a month for it.

        Usually it’s easiest to call the drug company. If they don’t have programs to help, they might point you in the right direction to get the financial help you need.

        Good luck and I wish you well

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    2. Carrie,

      Thank you for sharing parts of your heartbreaking story with me/us. I’m so glad there are so many of us who know how hard of a fight it is, if only so we know we aren’t alone.

      Be as well as can be,
      Charis

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  28. Thanks for sharing,

    Although in my case, diet and exercise helps, I have discovered a hormone imbalance may be the cause of many autoimmune conditions. The challenge is how to get them back into balance.

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  29. I remember waking up and just waking up. Not, “I have to get up to get the pain medication, but I hurt too much to do so.” Sometimes I wake up and for a moment forget, forget that I’m very very ill. Then the shock hits me. No, I have to fight all day. People often say “I’m not afraid of death, I just don’t want to be in a lot of pain. I’m afraid of pain.” I used to say that. My worse nightmare has come true. I am in pain. The thing people fear more than death, is me. I watch people do things I used to do, meet up, go to conferences, take trips…I could do that and only think about packing. Now, it’s odd to see how many friendships were based on people getting together. If you can’t do anything, or if fighting the pain just wears you out, well, can you even be a friend? Isn’t friendship doing stuff? I don’t even know who I am anymore without the medication. That person, that healthy person, with her smile and laughter …..has become someone that worries people will think she’s the person that “complains too much” or “is never up beat”. They don’t understand how I long to just share with someone else my fears and my anguish and what a gift it would be to just let me VENT IT ALL, and not be upbeat. Just once. Instead I get “We like that you don’t complain too much” in emails as they share their happy healthy lives with me via the computer. Thank you for this. I wish I had the compassion and empathy I’ve learned from being ill.. before I become ill. I don’t blame people for not wanting to hear me complain. But, it would be a lovely gift it they would just let me share with them my fears and how hard this is. It makes you even more alone when you have to hide the pain.

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    1. I do so understand your pain and the need to share. If I ever get over this, I hope I do not lose my empathy. I think that if I ever do get over this, my one desire is to be able to listen, and to share how someone else can get over it too. God bless. Write anytime sharing your pain. I am so very sorry you have to go through this. I pray you will find relief. I pray that we all can find relief and that the medical establishment will strive to help us recover, not ignore, make fun of us, isolate us.

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    2. I have a very close friend here in town, one of the reasons that I moved here. She runs a special needs cat sanctuary & shelter. She’s always said that I could call her & talk to her about anything, so when I was going through a particularly rough time, thinking that it was all downhill from here & grieving the loss of my old body & self, she listened & was very supportive. A few weeks later, I’d bonded with one of the rescue kittens & wanted to adopt her. My friend told me that after I’d told her all that, she wasn’t sure that she wanted me to adopt Bitsy. In the end, she agreed, but now I feel like I’ve lost one of the people to whom I could vent & that leaves me with one friend who is in constant pain herself, so finds it hard to let me vent because she’s wrapped up in her own shit, & my helper, who really doesn’t totally get it. When I say that the pain is really bad today, she says, “I know how you feel” & proceeds to tell me how bad a bruise hurts her. I agree with you about having someone to whom one can vent & they just listen & don’t try to identify with you. I suppose that’s called a therapist, but wouldn’t it be nice if it was a friend or relative?

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      1. Linea, It is so sad that you have such a difficult time finding someone who is willing to listen. I have one friend who will listen and share. However, I must always call. I am almost never called. That makes me feel like a burden instead of having someone to share with. I have one other friend, with a doctorate whom I can share with … unless I disagree with treatment matters. Have to be so careful, sometimes it is not worth the effort. It is horrible to be so isolated. How can we exchange even email and protect our identities on-line? Maybe a temporary email until acquainted?

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      2. Linda. I can identify with so much that everyone here is going through. I wish it would be safe to give out even my Facebook and could get texts from others needing to vent or just get support without judgement. Only those of us with this kind of chronic pain etc., can understand and give the right kind of ear.
        I would like to say be strong and hang in and all that jargon but it can sound shallow. So I wish you friendship from the right people.

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      3. Linea,

        What a powerful story. And so sad. I am angry for you – I hope the cat brings you joy. Animals are so in tune with their humans.

        I hope you are as well as can be and have some support system other than the cat lady!

        Charis

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    3. I feel as though these words could have been written by me. To know there are so many others suffering is sad. We want our healthy life back. There is no chemotherapy to heal us, the cycle just goes on and on. The pain is relentless. We want to blame God, or worse, ourselves. Friends and family, support us, stay with us. We need you.

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      1. Hi Mollie,

        Isn’t it nice, however painful, to know there are others who think exactly the same miserable thoughts about our realities? I find some comfort knowing I’m not alone.

        What you said – “we need you (friends and family)”

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    4. Kitty, you can find some amazing people online and have amazing friendships with them. FB has groups for every illness under the sun, as well as generalized groups. I’ve met some great people who truly get me. The greatest thing is that you don’t have to hide anything from someone who has the same medical problems you’re fighting.

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    5. Hello Kitty,

      Wow! Thank you so much for sharing such a heart-wrenching outpouring from your soul. I’m so glad you felt this was a safe place to share. I hope you are able to either rebuild or build new friendships where you have good support for being you. Too often we feel we must sacrifice just so we can maintain relationships, but we must must must find a way and a place to let out our fears and hopes and dreams and bad days.

      Continue fighting, but I do hope you can find a place where you can let down your guard!

      Charis

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  30. Your experience is becoming a normal life for a lot of people. Toxic food, air, water, personal care products, GMO’s, pesticides, herbicides, etc. all contribute to every one of the thousands of autoimmune diseases.

    Top all that off with disastrous medicine. Vaccinations containing mercury, formaldehyde, thermosal, fetal tissue, human DNA, dying viruses. They overtax the immune system, causing your body to attack itself. Then take some antibiotics, which one dose will knock out all the good bacteria lining the gut (where your immune system lives) for 9 months to 1 year. Then take some steroids, which also injury your immune system, and you have complex diseases that will never heal if you put all your faith into “modern” medicine.

    No one will be well with our current medical system. They don’t make a profit if you aren’t sick. The goal is to keep you sick, dependent on their medicines which won’t cure you – until the day you die.

    The only way off this sick train is through diet. Start out with a strict organic autoimmune diet and then go from there.

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    1. What if the strict diet works against the disease you have? My body can’t deal with fiber in any form. I end up in the hospital with a bowel obstruction. I’d love to eat veggies and fruits all day…

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    2. Hi Katherine,

      Thank you for your comment. I agree that there are a lot of environmental and societal causes of serious health conditions, many of which can be cured or treated effectively through diet. Many strongly believe in diet and exercise alone – and I fully support those people! Ankylosing spondylitis cannot be cured, but many people do find relief or at least a managing of their disease through diet.

      There are a lot of diets out there. With Ankylosing Spondylitis, there is not one specific diet that works for everyone. Since not enough research has been done to actually define AS as an autoimmune disease, even though most of us believe it is one, we call it auto-inflammatory for now.

      Diet alone may work for a few people, but for many it does not. I’m one that diet doesn’t help, and I’m very careful about what I eat. I’m vegan – and a healthy vegan at that.

      For the severity of my AS (AS affects all people with different levels of severity), diet and exercise complement the medications that I must take in order to function. I hope for a day that I don’t need to shoot myself with powerful chemicals, but that day is not going to come for me unless, like you said, the system changes to focus on maintaining health rather than sickness. Only then will the exorbitant amounts of money spent on medications to treat diseases be split between that and actual research to find cures. The money is out there. The skill is out there. The desire is out there. Fingers crossed we finally get there!

      Thanks again – and sorry it took me half a year to respond!
      Charis

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  31. Thank you for your beautifully written words about this dreadful disease. My husband contracted it several years ago and we spent years trying to get the medications correct so he could get rid of his hospital bed in which he stayed for over 6 months in such pain, I could not care for him myself. We never identified the trigger and at age 59! he lost his job and career because it took him three hours to get out of bed. The doctors in Maine thought his swollen foot was due to possible spider bite! Then his knew blew up and then his sed rate went from 10 to 125 or something outrageous. He got a second opinion in Boston and in 15 minutes the rheumotologist put him on humira weekly! It has been in remission since. Thank you to the researchers and other patients for reaching out to each other. Warm wishes, the wife of a victim

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    1. Wendy,

      Thank you for sharing parts of your story. I am always so appreciative when spouses are supportive in the care of their partners – I know that AS can really throw a kink in relationships; I hope you have support around you to get through this together. I’m so glad your husband is (still?) in remission.

      Charis

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  33. Pingback: From One Of Our Own | The Faces Of Ankylosing Spondylitis

  35. Thank u so much for sharing this with the world. It brought tears to my eyes reading exactly how I feel every day. I was also diagnosed with ankylosing spondylitis at the age of 32. 3 surgeries and 4 years later I’m finally done with the work comp company that did everything to make it worse, my job of 16 years is lost…..but my daughter, who I am sole custodian of, is out of therapy and genuinely happy again at times…..that is what makes me a warrior. And people like u, who let us know we’re not alone, and that it is ok to not be ok with what we’re left with forever…..God bless u everyday of your life!!

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  37. Charis,
    Thank you for sharing this… I have felt all these things… AND yet have been able to reclaim a lot of what I thought was lost forever with diet and lifestyle changes. Dr Sarah Ballantyne also has AS (as well as other conditions) and has been one of the major contributors to the Autoimmune Paleo movement (www.thepaleomom.com/autoimmunity and http://www.autoimmune-paleo.com are good places to start if you’re curious). It is helping thousands of us with multiple autoimmunity to keep our conditions in check and reclaim our lives, though they are certainly modified…but we have been able to regain that sense of really living. At one point I couldn’t leave my bed for more than 30 mins for a span of 6 months and was pretty much dependent on others… As of now I can work 25 hours a week from home, participate in Lindy Hop dances a few times a week, do some gentle yoga or go for a walk… and still care for myself! It’s insane to think about, and hard to believe sometimes that changing my diet and environment made so much difference, but it really did. The learning curve sucks, especially when you don’t feel well, but it is so worth it to try… please feel free to write me if you’re curious… yes this is our reality, and it sucks, and it isn’t fair that we don’t get to be normal young people and do all the things we imagined, but I am firmly convinced that things can be better than they are now ❤
    Susanne

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    1. Thank you for your comment. I agree that many serious health conditions can be cured or treated effectively through diet. Many strongly believe in diet and exercise alone – and I fully support those people. Ankylosing spondylitis cannot be cured, but many people do find relief or at least a managing of their disease through diet (there are several suggested by many) with a combination of other things.

      I’m one that diet doesn’t help, and I’m very careful about what I eat. I’m vegan – and a healthy vegan at that. For the severity of my AS (AS affects all people with different levels of severity), diet and exercise complement the medications that I must take in order to function. I hope for a day that I don’t need to shoot myself with powerful chemicals, but that day is not going to come for me unless the system changes to focus on maintaining health rather than sickness. Only then will the exorbitant amounts of money spent on medications to treat diseases be split between that and actual research to find cures. The money is out there. The skill is out there. The desire is out there. Fingers crossed we finally get there!

      Thanks again – and sorry it took me half a year to respond!
      Charis

      Liked by 1 person

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      1. Charis, That was such a thoughtful reply. There are an ever increasing amount of tools to help manage this disease. None of them are a cure or prevention… yet.

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