I shared my story on this blog hoping that it could help those who are in the incipient stage of this disease, for those who have been diagnosed and who are searching for solutions and pieces of advice as I was. Maybe people could learn from my mistakes without having to commit them and therefore have a smoother way than I did.
I would be extremely happy if you, the readers of this blog, chose to share your stories with me and with others like us.
The beginning: Young and Careless
I was diagnosed with ankylosing spondylitis during high school, at the age of 17-18 years old – a difficult stage in a teenager’s life, even under normal circumstances.
The early onset is a characteristic of this disease and even if you are lucky enough to be timely diagnosed, you are still not mature enough to understand, to accept and to know how to deal with it.
In my case, it took a long time until the diagnosis was clear and the moment it was confirmed I received rather little and unclear information.
Maybe medical terms are not a teenager’s best friend, maybe at that age I had other priorities and plans, but the thing is that I superficially accepted the idea that I suffered from a “bone disease” and I left it that way.
Looking back, my first mistake was being satisfied with the information received along with the diagnosis and not trying to read and understand more about this disease from the beginning.
Maybe the doctor’s recommendation at that time made me somehow reject the idea of finding out everything possible about ankylosing spondylitis, especially that I was advised to stop practicing all the sports I was doing at that time and to resume exclusively to medical gymnastics.
I was an active teenager, passionately fond of football and gym and I obviously didn’t react well to the suggestion of ending some activities I enjoyed and switching to a type of “sick people” exercises.
I was feeling well, it seemed to me that I was healthy and I underplayed the importance of medical gymnastics, even though I reduced the other sports activities.
The doctor told me that ankylosing spondylitis is not a disease which kills you, but it’s one that you die with. I memorized this phrase since the beginning, but it was only later that I fully understood it.
During the first three years since the diagnosis, I was only guided by the basic information I had received.
Young and careless, I took as “good and complete” everything I found out from the doctor and I didn’t bother to search for information, to read as much as I could about this disease and to understand deeply its mechanisms, evolution and effects.
I didn’t lift a finger to find out more than the doctor swiftly told me.
There were periods in the beginning when I was in pain, but, because it didn’t last too long – merely one or two months summed up in a year – I was dealing with them with some pills, just enough to calm the painful episodes. I was taking medicines for a while, then giving them up, I wasn’t exercising, I didn’t even have my x-rays on time… I was telling myself that if it didn’t hurt I could also have them after a year.
I believed, naïve and uninformed, that everything was well as long as it didn’t hurt.
This ignorant state lasted in total about three years – which in ankylosing spondylitis is enormous – and I was startled into reality when I realized that I had begun to have mobility issues, I was moving more and more heavily and my posture started to change, taking the specific “spoon” shape.
It was only when the obvious changes appeared that I realized I indeed had a problem and that I must start doing something for myself.
I should have been more concerned with the disease I was suffering from, I should have been more involved and I should have done something for my health earlier.
These errors made in the beginning cost me, they showed their effects in time and I realized this only after the disease grew worse.
Look at that one
It’s not easy to be a young adult and to be different – so obviously different – from your colleagues, acquaintances, and friends at an age when it seems that your life depends on what others think.
Today I look back and I add to my list of errors the fact that I listened to what others were saying, at the things I heard when the clear signs of the disease began to arise, affecting my posture and functionality.
I saw the way in which people were staring at me and I let myself geting affected by it, I didn’t think of myself as being a normal person anymore and I got to the point of asking myself what I did wrong to get this in exchange. I thought that I had always tried to be a good man and I received in return an incurable disease.
It was a mistake that I let myself getting affected.
Now I think that you are insulting yourself the moment you compare with somebody else.
Every person has his own way of being, his own problems, everyone is bearing their own burdens.
It took me some time to understand and to get used to the thought that I was not abnormal. I was only different. In the end, we all have our uniqueness elements. We are different, not abnormal.
I slowly realized that it was important to accept the way I was, who I was, with the disease being part of me, understood and accepted. When all becomes natural, you don’t care what others might think, how they see you, their words. Only then you are free to live your life.
It was difficult, especially that the disease showed up at an age which marks the transition between late teenager and young adult, but now I am at a stage when I could not be bothered by anything. Anybody can tell me whatever he/she wants regarding the way I look, I sit, I move…I am not affected at all and I don’t have any sort of problems with it.
Today yes, tomorrow no
I am reviewing the two mistakes, that of not getting informed on my own and that of getting affected by the opinion and behavior of the people around me. And I’m adding a new one which I could have avoided: I was not constant in dealing with the disease.
A characteristic of this disease is the fact that exercise helps to reduce and prevent pain; in my case it was and it is exactly this way.
During the periods in which I exercise, I’m feeling much better, pain almost disappears, I am not feeling “uncomfortable” with my own arms and back.
In the past, if I was feeling better, I had the tendency to postpone exercising, to find something else to do, to focus on work and I was somehow interrupting the “rhythm”, sometimes even for months.
Nowadays this is not happening anymore, because I finally realized how important constancy is.
I know it better
As I grew up, as I saw that ankylosing spondylitis was real and that it left marks on my body, as information was matching the signs and symptoms I was experiencing, I fell on the other side and I grew obsessed with finding out everything about this disease.
It’s not bad to know things, but in some cases it’s bad to make decisions by yourself, without consulting a doctor or specialized personnel.
I was reading on the internet the stories of some people who were stating that they managed to reverse the disease and I believed them. Then it was proven that they were not healed, but that they only managed to reduce the inflammation in their body, without fixing the damage the disease had already done.
I was reading about medication and I saw that on the long term, pills have side effects.
I decided by myself to interrupt the treatment and I didn’t take pills approximately one year.
What happened after this decision? In the first two weeks, I had rather greater pains, but they reduced, or maybe somehow I got used with pain and it seemed that it was good without treatment too. I was feeling the intensity of pain at the same level as before the treatment, with small episodes of few days of accentuated pains, almost once in two months.
I was telling myself that it was normal to be like it was, that I probably had better days and worse days, so I was going on without treatment.
There were more good days than bad ones, therefore, after a year, I realized that I was in fact very stiff, that I moved with more difficulty and that I couldn’t stand up straight.
Meanwhile, the disease was advancing: the x-rays and the RMN showed that alterations of two vertebras appeared during this period, with ossifications which stiffed the spine.
I later realized that anti-inflammatory drugs which I had given up, indeed had the role of keeping the disease under control, not only that of making you feel better and of reducing the temporary pain caused by inflammation.
Maybe these modifications would have appeared anyway, even if I hadn’t interrupted the treatment. I don’t know what would have happened if I had followed the treatment, but I realized that it was a mistake to make this decision without consulting a doctor.
There is one more step where I considered I made a mistake, but maybe it was better like this in the end.
Five years ago, my blood tests showed that inflammation markers were very high and maybe at that time it would have been good for me to enter the biological treatment program, based on injections. The doctor considered I was fine and that it was not the case for me to follow that treatment, so he sent me home.
I don’t know what would have happened if I had taken the treatment, because it has some side effects, but I definitely could have discussed more with the doctor, insisting on having run more tests and possibly follow that biological treatment for which I would have assumed the consequences.
Maybe the evolution of the disease would have been totally other, I don’t know, but I should definitely have fought for my cause better and not leave the hospital simply with a “you are very good, don’t worry.” I could have asked for another opinion, to insist. That treatment costs 30.000 – 35.000 EUR per year, and at that moment I was eligible for it.
Now I don’t have the inflammation markers so high in order to be able to benefit from the treatment, but the disease is progressing, and it is very aggressive.
For the time being, I am determined to do my best to keep the disease under control, to live a normal life and even get to do things I couldn’t do so far.
Probably those who are diagnosed nowadays benefit from complete and correct information from the beginning, given the fact that medicine has been progressing at the speed of light. What was known about the disease 10 years ago cannot be compared with what it’s known these days. Psychological counseling is part of the treatment, medical gymnastics is designed as training which doesn’t make you feel disabled, and the approach of the cases is integrated and multidisciplinary. Or at least it should.