When a person is diagnosed with a disease they go through stages emotionally and physically. Ankylosing Spondylitis warriors are no exception. I cannot tell you the number of times I have questioned my sanity. I have hit the point of exhaustion from pure frustration more times than I can count. On the flip side, I have felt strength, achievement and relief I never thought possible. I must start by saying that these feelings can turn dark quicker than we realize. It is up to us to accept them, deal with them, and move on. We must keep in the back of our minds that these disruptive feelings are only temporary. It seems for me, when the pain slows I find myself looking back at those weeks of struggle and wonder why I let it get the best of me not only physically but mentally. I will admit that it never fails when a flare occurs I feel myself spiraling out of control again. For me, I feel it is due to the loss of control over my body and mind. I know deep down that I can do it, but when the pain is at its peak, I haven’t slept in 6 nights, and I have a full schedule, I feel desperate. Desperate to just feel better again…normal. Below is my list of 3 stages of AS. I have found that they are an ongoing cycle of experience. Each time around the experience may be different, but somehow it always seems to fall into one of the stages again. Can you relate?

Stage 1 – Why do I feel like this? Can anyone help me?

For years I went from doctor to doctor only to be told nothing was wrong with me. They would say it was all in my head. I knew my body and I knew something wasn’t right so I kept looking for my answer. This is extremely important for all of us. We MUST be our biggest advocates. It took countless no’s to get a yes. I never gave up questioning each doctor along the path and in the end, it paid off. I was diagnosed with Ankylosing Spondylitis. It explained years of pain, physically and emotionally. I was re-assured that my feelings were real. Each time I go to my doctor, I know that if something is bothering me it’s important to talk with him and explain what I am feeling. Even if I think it doesn’t make sense, every bit of information is helpful when it comes to AS. When you have an illness it is important to never stop questioning.

Stage 2 – This is not fair! Will the pain ever stop? I want to give up!

So, I was diagnosed, but now what? It takes how long for a treatment plan to start working? It may never work!? This isn’t fair! I can barely sit or stand for longer than 5 minutes. I want to play with my kids as any normal parent would, but I’m too exhausted to pick myself up! I just want to be normal. I hate that I can’t plan ahead because I don’t know what tomorrow brings. My family and friends shouldn’t have to suffer along with me. They didn’t sign-up for this. Neither did I! Isn’t there an easy fix? I just want some relief from the pain. I cannot stomach another pain pill. I want to be out of this fog. It’s as if the pain will never end.

Stage 3 – I CAN do this! I am stronger than I realize. I am not alone in my battle. I am a warrior!

My treatment is working! I forgot I had this type of energy!! I feel like my old self again. I can’t believe I was at such a low point before. I need to realize I can get over any obstacle in my path. I CAN still love and deserve to be loved in return. I CAN spread AS awareness in hope to help others who are battling along side me. There is an amazing AS community who is always there for me whenever I need them. I am not alone. I have the support I need to move forward on the good days and the bad. My hope, determination and positive attitude can carry me over any hurdle. Each day may present a new struggle, but I can give 100% to approaching it with a positive attitude. I believe this is the most important stage. It is extremely important that no matter how far we stray from this stage we find our way back.

If you are a fellow AS’er you are probably finding yourself all too familiar with one or all of these stages. It is okay and normal to have our down days, or even weeks. Unfortunately, it will be something many of us will always have to fight against. The important part is that we find our way out of the dark place and know that we are not alone in these feeling or AS fight. The pain of AS can even knock the strongest person for a loop. Feeling helpless for a period doesn’t necessarily mean we have given up. It just means we have to regroup and remember why we are fighting. It may be for our family, friends and even ourselves. After all, we are the ones with AS. If we can’t get better for ourselves first, how are we to ever be better for the people around us? We are worth the fight!


  • Stephen says:

    At their June, 2008, seminar in Denver, the SAA provided a speaker who said that after diagnosis with AS a patient will go through the five stage of grief. While not true for me, several friends found this to be exactly what had happened to them.

  • Cheryl Smith says:

    I read your story and it seems so similar to my sons. He has been battling chronic pain for 4 /5 years and cannot get an answer. His cousin has this disease and I am wondering if he does too. He has had a multitude of tests and they tell him the pain is in his head and to stop looking for answers and just deal with it. How do you tell a 30 year old who was a active person and athlete to stop looking. I am a nurse and I know there is an answer. Who did you finally see to get diagnosed and where?

  • Kristy says:

    My diagnosis was at the age of 15 . It took 4 years for the Doctor’s to find out I had A.S. So I was 11 when this A.S. came in and destroyed my hip’s . 1st surgery for hip replacements on both sides at the age of 11 . Now being 37 years old had 16 total hip replacement . Waiting for 2 more now to be done so maybe I can walk again ? It started in my back really bad about 10 years ago. I go through these stages over & over. As a child I didn’t understand & thought I would be ok after my surgeries. Not the case ! It’s a battle everyday . But hope is out there ! I want to hug everyone with A.S. & tell them everything will be ok if we keep thinking positive ! We are very strong people ! All the pain can really get me down but then it eases up after a few weeks of down time . Then I get a week or a few days of no pain. I can catch my breath & be happy go out in the world ! Happy Day’s !! We need to make everyone aware of what A.S. is . In all this time only 1 person knew what Ankylosing Spondylitis was when I told them what I had . Most Doctors don’t even know ?? We have to get the word out so people will start helping fight this & find a cure ! Hope, Strength , Awareness are my goals! Thank you for taking the time to read this . Probably not what I was supposed to write but this is a little bit of my story living with Ankylosing Spondylitis

  • Kristy says:

    Having Ankylosing Spondylitis I have been through everyone of these stages ! To tell you the truth I’ve gone through some of them many times . My names is Kristy and I’ve had Ankylosing Spondylitis for 28 years !

  • chuck says:

    I don’t know about five but three of them I have definitely felt. especially the it isn’t fair felling’s I am 36 and have a 2 year old son he doesn’t understand why daddy cant get down on the floor and play or run and chase him thrue the house and I often wounder if the pain in my back,hips,sholders or breastbone will ever stop with out having to take all the pain pills

  • atul gahlaut says:

    i m suffering from AS from past 3 years.Initially i was not able to walk and always limping.But later i started slow running and now i can run as it was before.

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