After being diagnosed with AS I remember thinking in my car on what seemed to be the longest drive home ever, how do I explain this to my loved ones?  I have had health problems all my life but they were things that I COULD explain, not a disease that I knew nothing about.  How do I explain something that I don’t understand myself.  I have 2 small kids, how do I explain to them that mom’s bad days will be days that I need a break or maybe a little extra help from them?  I may not be able to take them to the park to run around, shopping at the mall or go on the green-way for a walk because even a 1/2 mile walk will knock me on my butt for days after.  How do I break down and accept that their real life super hero may not always be so super 100% of the time?  I felt so out of control!  As a person who has always needed to be in control of things, even down to little details, this was going to drive me insane! My doctor stressed how important it was to share the information with my support systems but I just couldn’t grasp that.  Why would I want to put any extra stress on my husband, kids, friends or family?  There are people out there fighting worse health problems than this, who am I to feel helpless? I could do this alone, or, so I thought.

It’s okay to break down

I did indeed tell them I was diagnosed with Ankylosing Spondylitis, I just didn’t let them know how bad it could get some days. Those who know me well, know if I want someone to know something, I will tell them, I just have to do it on my own time, in my own way, not when I necessarily “need” to. I needed to accept the changes in my life before I could share it with anyone else. I would walk into the doctor for my monthly check-up and just break down.  I felt like a basket case. It was the only place I thought I really could, as if I would be shunned from family and friends if I opened up.  I wasn’t good at expressing emotion.  Tears weren’t okay for me. I had always encouraged others to let out their feelings, but for me, personally, I wouldn’t allow it. Growing up with health problems I learned not to express the pain to protect my loved ones, but now being older I realize how much that was for a child and have learned from it. The doctor would tell me my break-downs were a normal stage and it was okay to cry, I just needed to find the courage to do it with my loved ones also.  I would need their support. He said a break-down now and then is good for a person, it shows character…that actually made me laugh for a moment.  He, learning my personality quickly, knew my sarcastic way of thinking and liked to throw in a few remarks here and there.

I am not made of steel

I had to accept I was not made of steel.  I had to be selfish and find support for me.  I needed help and finally accepted I could not face this alone. I was always annoyed by the people who complained about EVERYTHING, I didn’t want to be that person. Little did I realize I was not alone.  There was a select few I decided to share the “real” pain with.  They were people I knew would never judge me.  They would listen with the open ear I needed and wouldn’t tell me I was wrong or even (as petty as it sounds) go behind me to gossip of what a complainer I was being.  I know it sounds silly to think about people who will talk behind your back but at that time that was what was going on in my head, not wanting to be “that” person.  The one everyone avoided because they didn’t want to listen to their complaining.  I can pass on the medical description to my support system but how do I really explain it to them? I searched for a way to tell my loved ones what it felt like to have Ankylosing Spondylitis.  How do I tell them I am sick when I don’t actually “look” sick?  Unfortunately, people sometimes only believe what they can “see”.  It was actually recommended to me by one of the support groups I found online to share an article called the “Spoon Theory”, by Christine Miserandino.  The web link is http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. It is about a woman that has Lupus and it was her way of explaining what she was going through to a friend.  What it actually “felt” like to be sick. Although I do not have Lupus it explained my days so well that I put it out there for my support system to read.  The explanation in her article was amazing for anyone who has an illness or disability.  It was as if she took a page of a day in my life and wrote it down for all to read.  It stressed how important our “spoons” are daily and how so many “healthy” people take them for granted. I could instantly tell the people in my life who thought I might be a little insane and the ones who genuinely wanted to be there for me.  I have a very good friend who said something to me when we were younger that has stuck with me. In times of obstacles you learn who your true loved ones are. I found this very relevant when I decided to share my “news”.  Was I over thinking their reactions?  Possibly?  I couldn’t shake the feeling though that some just didn’t “get it” and soon I just began to slowly distance myself from them for both of our sakes.  It wasn’t fair to them to have to “listen” to me and it was definitely not fair to me to not have the support I needed to face the newest challenge in my life.  I am human, we all have stress, but I didn’t need any extra stress if I was going to give 110% to this challenge.

The best help of all

Although I still have my days where I feel like a burden to my loved ones because I can’t do the little extra or I need to vent about the yucky feelings, I do know that I am very blessed to have people who are there for me.  Without them the bad days would be even harder to get through.  They don’t even realize the little things they do like just pouring me a glass of juice because I can’t twist the cap, a call/text/email just to say hello, or just showing that time was given to look up information on AS really gives me comfort.  As an AS patient, I wish I could really explain what a “lonely” disease this is to our loved ones. It’s frustrating and confusing.  All I can stress to our loved ones is we DO need your support. A helping hand, an open ear and heart, these things can make our day.

Share with me

Question time.  If you are an AS patient, what are some of the great things your support system can do/does for you?  What has worked?  What has not? Do you prefer to be alone?  I know some days, I must admit, just being left alone is the best “help” I can get. How did you explain Ankylosing Spondylitis to your loved ones?  What reactions did you get? What are your biggest frustrations? What are you most thankful for?

If you are support for a person with AS, what do you do to try to help? What has worked?  What has not? What questions do you have about Ankylosing Spondylitis? What kind of support would you like? How did you feel when you were told your loved one has AS?  What are your biggest frustrations? What are you most thankful for?

As you see, the questions are pretty much the same whether you are a fellow AS’er or their support system.  This is why spreading awareness is so crucial.  We have so many unanswered questions and together, if we get the word out there, we can help us live “with” AS, not “for” it!

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