If you are one of the lucky “healthy, normal” people out there reading this, I have a favor to ask of you. I guess this would work only if you are over the age of 30 as well, so my apologies to any younger readers – I am quite sure I have plenty of questions lined up to ask you as well! At any rate, for those of you 30 and older, who have lived out “healthy, normal” lives, I want you to imagine what your life would be like right now if you cut out your 20s. In other words, what would your “life” look like if you skipped from age 19 to age 30 and you never experienced any of the things you went through or accomplished in your life during that time. Would you have a college degree of any kind? Would you be married? Would you be in a relationship? Would you have kids? Would you live in a house that you own? What would you be doing to make money? I could ask many more questions, but I think you get the gist of it.
The truly “GREAT” problem I have with Behcet’s (and other disease / syndromes like it) is that they tend to “strike” when a person is young – often when one is in one’s 20s as it did with me (that is not to say it didn’t PRESENT when I was younger, it just got very bad and went “systemic” in my early 20s). Furthermore, the severity of disease is often much more severe in individuals who are HLA-B51 positive (that would be me as well) who are young … and “traditionally” males have it “worse” than females (this is not true in the West, but I’m not sure the other 2 criteria are included with that as well – so much information is just being discovered about this “syndrome”). At any rate, I find Behcet’s and diseases “like it” to be so disgustingly insidious because they essentially “steal your youth.” These are not typically “progressive” diseases like MS or Lupus or RA (although my most recent bone scan would beg to differ at least on behalf of my large joints – that’s another post and many other topics!); that is to say that with appropriately aggressive treatment at an early stage of the disease, Behcet’s DOES tend to go into remission – but not quickly (at least not that I have seen) and certainly not while one is in that 20s time of his or her life.
I pose this question to the “healthy, normal” among you just so you can START to get a feel for what it is to be coming from my perspective – that is, after all, the “purpose” of this “blog.” I want you very much to imagine that you have no formal education aside from your high school diploma (and like me, quite a few graduate-level credits to your name but no formal “degree”); you have never gotten married; you have never had children; you have never worked a “normal” job because you physically cannot; you do not really have any “friends” because all of your “friends” have abandoned you years and years “ago” when things got bad and stayed bad and it was just too much for them to “hang around” while they were busy making more friends and getting married, &c. &c. I really want you to think about this and to think about how profoundly different your life would look if you suddenly woke up at the age of 30 after being in a coma for a decade. Would your life even be recognizable? Would you even be able to define “who you are” without the bits and pieces that made up that decade of your life?
I know this is a difficult exercise (for anyone, really), but I really do implore you to do so if you have not been in the position I have been in in which your 20s were “stolen from you” and you really had no say in the matter other than working as hard as you can / could just to stay alive. I really would love to hear from all types of people about this kind of thing – from those of you who are like me (that is, those of you whose illnesses either started or intensified just as your “life” was starting) and from those of you who have been able to lead “normal” lives. I want to hear how it makes you feel – whether you have lost that time or not and if you haven’t, how even think about not having all of the things your 20s brought you makes you feel and what your life would look like now without any of it.
I know this is a really heavy topic and post, so I am going to end it here tonight. I hope you are all having a wonderful evening (or morning or day depending on where you are in the world!) and a happy and healthy week! Thank you for at least trying to put yourself in my position if only to try to understand my “perspective” a little bit better. I appreciate it more than I could ever hope to articulate.
And with that, I do, (again) adieu.
❤ Always, Beth