Meet Daniel

My name is Daniel and I have been under the thumb of rheumatoid arthritis (RA) for 24 years.  My 33rd birthday was just this past week, and for those of you who don't speak math as a second language, I was nine years old when my life changed forever.  Now, back when I contracted the disease, it was simply called juvenile rheumatoid arthritis.  The moniker "JRA" covered all types of youthful autoimmune arthritis -- not like today, where there are many different types of RA, broken up into many different categories.

Getting It All Out

All my life, I have spent my time trying to find the best ways to fight my disease.  To be honest, it has taken its toll on everything from my self esteem to my love life to my career choices.

Recently, I have embraced the fact that I seem to have an ability to verbalize the feelings and thoughts that sufferers of my illness experience on a daily basis.  It was not something I had ever thought I would be good at, or be happy doing.  A writer?  Me?  I almost got a perfect score on the Math section of my S.A.T. tests, and the English part, well, let's just say I did not expect to win a Pulitzer prize.

It all began one day when I sat down during three of the most hellish years that RA had handed me, and I began to write.  I just had to get it out all out on paper, because even I -- the person everyone thought could shoulder anything -- was having trouble keeping it together.  Before I knew it, I had written an entire book, and I knew that I wanted to help get the word out to as many people as possible -- not just about RA, but about the entire slew of autoimmune chronic illnesses.

Hopefully, one day, I will be able to find someone to publish my book, and you can all read about my exploits.  Today, though, I want to talk about something a bit more upbeat -- what to do when you are well!

What To Do in Good Times

Most often when authors write about illness, it entails a guide on how to handle the bad times -- the pain, the mental anguish, the depression, and the like.  No one ever tells you what to do during the periods when the disease is in remission, or inactive enough to allow you to make decisions that could affect the rest of your life.

I am at such a crossroads right now.

The last three years of my life have been plagued with the extreme symptoms of RA, diabetes, hypertension, and even a lessening of the sight in my right eye.  Yeah, it's a heck of a lot, I know.  But as most of us who suffer chronic illness know, most times we are expected to suffer in silence -- expected not so much by our friends and family, but by ourselves as we place the burden of silence on our own heads.  We don't often ask for help unless we really need it.

I was the same way, and still am, for the most part.  Now that my disease is in some form of remission, I simply do not know what to do with myself.

For the first time in my life, I am faced with the possibility of living on my own.  I have always had to bear the stigma of living at home with my parents because I was not confident enough in my own health to even think about moving out.  It went on so long that I began to use it as an excuse for not moving out, rather than a reason to stay home.  It became so comfortable for me to stay where I was, that any time I even suspected I would have to deal with the subject, I would instantly say something to myself like, "But what if I fell and could not get up?"  (No "I've fallen and I can't get up" jokes please.)  By the time I looked up, I was 32 years old and sleeping in the same room I had been sleeping in for the prior 15 years.

Now it is time to leave the nest, as it were, and it raises a ton of questions.  (Not to mention, it plays havoc with the self-confidence.)  I want to live by myself for sure, just as I want to find a girl, marry her, and possibly have a family.  Those are things that I never thought were in the cards for me.  The thoughts running through my head are numerous and frightening.  What if it turns out I can't live by myself?  What if I live with a roommate and he or she doesn't understand my disease?  What if there is no elevator in my building?  What if I meet a girl I like and she sees the way I have to live? (At my parent's house it was easier to hide the things that were done to make my life easier.)

The things creep up into my mind can be scary if left unchecked.  Like I said earlier, there is no guide to being "well."  No one ever tells you what to do when the disease remits and it is time to make a serious life choice.  It can be downright terrifying.

Just Like Everyone Else

Terrifying or not, though, I realized something:  all the thoughts I was having about life outside of my parents' house -- life away from my immediate support structure -- were normal.  Not normal to someone with a disease, but normal to anyone, anywhere.  Just because I happen to suffer from RA doesn't mean that I have thoughts unlike those of the average person striking out on his or her own for the first time.

What it does mean is that I will have to make a few different arrangements than someone who does not have a disease like mine.  If that means finding a first-floor apartment, or a building with an elevator, then so be it.  Not only that, but I also realized that years and years of having real problems made me impervious to the issues that might normally upset the average Joe.  Think about it.  When you have to worry about making it to the bathroom in time in the middle of the night with swollen ankles because you are crawling on your hands and knees, then worrying about your neighbor stealing your newspaper doesn't seem too important.

If you really take a look at yourself and be honest, I think most of you who suffer from chronic illness will realize that you freak out about the "small stuff" much less often than most.  This is one of the benefits of having a disease that you confront on a daily basis.  (Yes, diseases have upsides.)  I know it's sort of a taboo to mention it, but it's the truth.  Enough of an upside to want to keep the disease if there was a cure?  Probably not, but it's not all doom and gloom.

Taking a Leap

So, I have decided to go ahead with the "moving out" plans.  The simple fact of the matter is that even if I fail, I will have learned something about myself.  And fail I may.  If 24 years of RA has taught me nothing else, it is that you have to keep trying.  I am not saying this because I want be sponsored by Hallmark to write greeting cards or because I want to spread the word about horribly overused clichés, but the fact remains there is no other choice.

People say to me all the time, "I don't know how you do it, I'd never be able to."  Guess what -- yes, you would.  Because the alternative is to do nothing.  The alternative -- a.k.a. "not trying" -- means you just sit back, accept defeat, and let the disease run rampant and take your life away, be it physiologically or mentally.  That's not a choice in my book and, I'm sure, not a choice in yours.

I have enjoyed sharing my thoughts with you on this, and I have many more.  Enough to fill a book, actually.  (Hint, hint)  I am always open to hearing from anyone who has questions, comments, or thoughts about anything, disease-related or not.  As always, keep on keepin' on.

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