You know how you feel right after a really long flight? Aching stiffness, pain, and exhaustion from being crammed into a tiny seat where you can’t sleep comfortably. But worse, much worse. Now imagine that’s how you feel just about every day and you still have to go to work, run errands, cook, clean, and maybe even take care of a family. Welcome to life with Ankylosing Spondylitis (AS).
AS is a form of arthritis that mainly affects the spine. According to the Spondylitis Association of America, it “causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort.” AS is known to cause new spinal bone formation which leaves a person’s spine, “fused in a fixed, immobile position, sometimes creating a forward-stooped posture.” That’s not in only a few rare cases – that’s in most advanced cases.
And no, it doesn’t go away. People living with this condition do not get to stay in bed all day. In fact, some couldn’t even do that if they had a choice.
“Personally, I haven’t slept in a bed in over 10 years. I cannot lay down”- Tracy.
So what do people with AS want everyone else to know about their condition? We reached out on Social Media and to people within our community to get some firsthand perspectives. Here’s what people had to say:
“Even though I might look fine on the outside, I am not fine on the inside.”
Most people with AS have good days and bad days, but even during good days, they still don’t feel the way that you probably feel on an average day. People with AS are often in severe pain and exhausted constantly.
“This disease causes pain and stiffness and very limited flexibility. I have lived with this illness for 30 years and it always makes me angry when people tell me that I look fine! I’m not fine, I’m in terrible pain. I’m exhausted all the time, I can’t sleep, and I can’t do most of the activities I love to do or I will suffer terribly for days after.” -Anonymous
“[I wish people knew] how painful it really is, how exhausting it is to maintain a happy exterior with all that pain for my family… I would love to be the old me again. I miss me.”- Anonymous
“It has varying degrees of symptoms for every person. It’s super painful when it’s flaring. But I may not look different at all, except I’m moving slower and I’ve been told my eyes show it.”- Anonymous
“I look young and healthy. So people look at me funny when I ask them to lift something for me or I say I can’t engage in an activity like skiing when I used to.”- Liz
“Your back pain is not the same as my back pain (so, don’t give me advice).”
AS is not just arthritis, and it’s not just back pain. People with AS say that when others give them advice about how they can manage their pain, it is incredibly frustrating.
“AS is so much more than just arthritis and affects so much more than my back. I get fevers, fatigue, and muscle spasms in addition to nerve pain and inflammation all over my body.”- Anonymous
“My least favorite comment has to be, ‘Oh yeah, I have back issues too.’ It’s much more than ‘back issues’ or ‘arthritis’.”- Heather
“When I explain AS to some people, the two responses that bother me the most are: ‘oh, I have a bad back too’ and ‘Sucks getting old, huh?’. The first one is equating a few strained muscles with a debilitating, degenerative, life-long chronic pain disease, and the second one is willful ignorance after I have explained that it is not a disease of old age.”- Suzanne
“When you say it’s like arthritis, people think ‘old people’ and ‘get over it’. They don’t realize the loss of flexibility and energy- Liz
“Meaning well, they say things along the lines of, ‘oh you are too young’ and the sort. Another one of my favorites is, ‘My back hurts too, you know!’.”- Anonymous
“I love being told to stand up straight as if you would choose to walk bent over like this! Everyone always has suggestions, be it supplements, exercises, etc. That works for their arthritis or aches [so they think it] will make me all better!”- Anonymous
“I am not just being sensitive.”
Many people with AS say that they get strange looks, eye rolls, and even laughs from other people when they talk about AS, ask for help, or use a handicapped spot in the parking lot. But just know, people with AS are not being overly sensitive. Their pain threshold is probably a lot higher than the average person’s and they are still in severe pain.
“I get out of my vehicle with my permanent handicap plate and people look. I have just gotten to the point where I don’t care what others think. I know me. I know my disease. I know what I go through every damn day.”- Anonymous
“We are not exaggerating when we say ‘I’m in so much pain I think I’m dying!’ and no it is not the same as when you broke your arm or sprained your ankle or got a shot in your knee. This is all over and this is forever!”- Anonymous
“People seem to get shocked that I have a handicap placard at 34 years old.”- Emily
“The famous question: ‘what did you do to yourself’ when they see me stooped over, limping, walking with my cane or walker or in a wheelchair.”- Minionette
There’s a quote that floats around social media that feels particularly poignant when it comes to life with Ankylosing Spondylitis and other chronic conditions:
“Be kind, for everyone you meet is fighting a hard battle.” – unknown
The truth is we don’t always know what others are going through. We can hear about someone else’s pain and try to relate, but sometimes that just isn’t possible, and that’s ok. The best we can do is to listen and support others with empathy and without judgment. Listening helps to make every battle a little easier to fight.
It is so nice to hear someone else, say all the things I feel everyday. It helps me to think I am not alone in this. There is never one day I am not in pain. My son and daughter both are physical fitness trainers. They both were always telling me mom if you would just keep your exercises up and do sit ups and walk or use a treadmill it would be good for you. They just didn’t understand that walking, standing, sitting, even sometimes laying down caused me more pain. I don’t want to take drugs so, I just keep moving from one seat to another. From one position to another each time the pain gets to bad I change positions. Even sitting in a car I have to change positions many times. I cannot go for a long drive anymore the pain just gets to bad. Like you said when people look at me parking in handicap and getting on my scooter they don’t see why I am using a scooter like I am not handicapped. If they only knew. I would not wish this pain on anyone. It has taken over my life. No more taking long walks which I use to walk 6 to 8 miles each day before this took over. Cant shop in the malls now without my scooter cant even stand in line to buy my groceries. Before I got my scooter I would sit on the floor at Walmart in line waiting for my turn to be checked out. People would ask me if I was ok. How do you answer them? I would just say yes just having problems standing right now. Well, like I said reading what you wrote has helped me from feeling like a freak. I am not a lazy person but, this pain has slowed me down so, much my home has suffered because, of it. Oh, just to feel like giving it a really good cleaning. Wow how wonderful that would be. Ok enough, I just want to thank you for your message. It sure has helped me.
Carol, So glad to hear this post helped you! Don’t forget you can sign up to share your story with others by clicking this link.
I refuse to let this disease make me bitter but it is hard when you know people think you are a only a whin bag if you say you r hurting .Try the day after Methotrexate for yourself if you think this is fun Throwing up my toe nails is not something anybody would do if they did not need it to feel better . I am glad that I am not alone in my frustration .We will not give up nor let the world bring us down yes it is a handicap but it does make a person appreciate those good days more and thank God for all the good things in life
This is a sentence of chronic, severe pain. Debilitating, making daily life an effort. Causes depression, anxiety, and anger.
The one thing that really bothers me is when I use the handicapped hanger in my car! I lool fine, but I am in constant pain, and after grocery shopping, I usually have to take an opiate and get into bed or a recliner! I feel like I’m cheating someone when I use a handicap parking spot!
I understand Carol, I’m a basketball coach and fitness enthusiast. I workout as much as possible and still suffer everyday. I do still have good posture but that makes me appear more normal and healthy to everybody and my suffering goes dismissed. The fatigue holds me back and the pain immobilizes me. When flareups occur they creep in slowly and without realizing it I stop moving and get cranky.
I know what you all feel and go though. I’m 32 years old with AS, RA and Crohn’s disease. People tell me I’m too young to go through all this….it made me so much stronger. When you get to the black and white photo…..we are prisoners in our own skin…..even on decent days…bending or stretching for something is a reminder of the daily struggles we go through and that’s one a decent day. Bad days…I’ve gone days without showering like I’m sure you all have because the thought of the energy to get out of bed and to even wash our hair and our bodies are just too exhausting. Thank god god for deodorant :). I’ve had older and younger people cuss me out and give me looks for parking in the handicap spots…It surely bothered me at the beginning but you know what…like one person said above “I know what I have to through every damn day”…I have trouble getting in and out of my car…sometimes people keep walking after they see that…others still put their two cents in…as I have in return to their not so kind words to me who is a complete stranger to them….Ladies and gents…remember you have the disease…the disease does not have you…yes, it has changed us and what we can and can not do but we have to educate people so they’re not so ignorant…keep your heads held high and take it one day at time and even when it is hard…smile….
I feel like that sometimes…when it is the last spot but I think to myself…what will walking half a parking lot to even get to the door do to me and the pain. My heart rate shoot up to 130-140’s from pain and walking in the grocery store. Just remember….you have the tag for a reason and you have full rights to be there if you feel you need to park in that spot…
You gotta wake-up, get up, look down and enjoy your day.
I have severe AS. I live alone, I cannot stand or sit without absolutely horrible debilitating pain. My pain is not well managed. I can no longer feed myself or prepare food. On a good day I am able to open a small container or yogourt. I cannot get myself a glass of water and using the toilet is almost impossible. I am severely malnourished and anemic. My doctor thinks that suffering has makes you stronger so I get very little medication. I am in my early sixties and I have had this since my late teens. My eyes are damaged, I have kidney damage and difficulty breathing. I fall every time I get out of bed. I can not afford home care and my family refuses to help me in any way. I don’t think you have any idea what life is like with this disease. I will almost certainly die alone and the sooner the better. I cry every morning I wake up because I know I face another day in hell.
Ruth…I am so sorry. Is there an Elder Service in your town? Perhaps they could point you to some help. Mine is not as bad as yours. I have Psoriatic arthritis as well. But no one should have to live like you do. Gentle hugs for you
I don’t know where you live but certainly there must be another doctor. There must be government services you can enlist. At least call your local emergency number and have them come and check on you. They can connect you with some help.
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Ruth please know that right this minute Im praying for you. I am so sorry you are facing this alone. I have a wonderful husbsnd and children and I still get depressed and have bad days. Always know that Jesus is with you and you are never alone. He listens to you abd I pray that God will send you a light to brighten your path and ease your suffering. I know you think its easy for me to say and I am not in your place but it really hurts when I want to do something with or for my family and I have to say no. Im not a very good no person . I feel like I let them down at times and I try not to complain all the time . My husband had colorectal cancer 4 years ago and he has a hard time too. We are blessed though and I hope if nothing else you know that you are being lifted up in prayer .
I really appreciate the comments about Jesus and prayer. AS gives me the opportunity to appreciate the promises of God that wouldn’t mean so much if life were more comfortable. For example: suffering produces perseverance, perseverance produces character, and character produces hope (Romans 5:3). I experience every day that my current body is in bondage to decay (Romans 8:21), and am deeply looking forward to the “new bod” (the resurrected one). In the meantime, I endure, pray for revelation, experiment, and adjust my lifestyle to my limitations. I’m actually doing very well right now and think I may have found a workable lifestyle that is fairly productive, fairly pain-free, fairly predictable, and fairly free of scary medicines. Blessings to you all.
Ruth, what you are going through is awful! Do you have medicaid? To start with if there is any way possible you seriously need a different dr & a pain clinic if there is one where you live. If you have medicaid there is a free service called “Med Expert” that I’ve used, they can help point you towards better treatments. Their number is 1-800-999-1999. There is a man named Joseph who has helped me. Medicaid & other health insurance companies pay Med Expert to help clients navigate the health care system & also of course to utilize healthcare funds appropriatly. But they will also call clinics & Drs & other services for you & arrange help for you. There is no reason for you to be living like you are. At least call 211 in your area. They will point you to various services.
I have just joined this community and empathize with everyone. I am though very concerned about Ruth. If I knew if she were near my area, I would gladly help her navigate the services and healthcare systems, as I’ve been doing it so long myself. I see the posts and replies were almost a year ago. Ruth, are you still out there? Message me please.