To ‘Have’ = ?

So, after I finished my last post…I didn’t mean it to be that long, really….I thought about what does it mean to ‘have’ something?  This never seemed to sit well with me whenever I went to see a physician – and there were many GPs and specialists along the route to THE diagnosis.  As you all know, those that ‘have’ Lupus, it is really difficult to point your finger with any certainty unless you know what you are looking at and can prove it with blood work – we’ll talk more about blood work in future posts.  So the plight to get a definitive decision on what the heck is unravelling your body may mean that you can see as many as 15-20 Specialists.  They all are looking to tell you about the ‘have’ or the ‘have not’ scenario – it’s not their fault, it is their job.

The dictionary definition, not that you don’t know, but so many parts of speech, transitive verbs etc, we just use them because that is what we know as communication, so to be clear I looked it up and here are the top 8 definitions:

have, verb: transitive verb had (had; unstressed, həd, əd), having hav′·ing

1. to hold in the hand or in control; own; possess: to have wealth
2. to possess or contain as a part, characteristic, attribute, etc.: she has blue eyes; the week has seven days
3. to be affected by or afflicted with: to have a cold
4. to possess by way of experience; experience; undergo: have a good time
5. to possess an understanding of; know: to have only a little Spanish
6. to hold or keep in the mind: to have an idea

So, here’s where I get hung up.  What this means is that when I say I ‘have’ Lupus, I am saying either inwardly or out loud that I own this disease, or,  I possess therefore I am in control of this possession and that I am affected or afflicted with disease.  Now I don’t know about you, but as I think about my life, when I reflect of the things that I have, I think about things of substance that creates happy endorphins, feelings of pleasantness, images of beauty, possessions that have been carefully and lovingly selected, my fabulous boyfriend, my beautiful and intelligent children – you get the picture? This did not include having Lupus.  So, you might be thinking right about now that I am in denial?  Not at all.  I am a realist.  I can and do accept that my body is temporarily or permanently confused and I certainly was reminded of that fact every minute of every day in the beginning when I was quite sick.  And if ‘having’ means in control, then I was going to be in control of getting well.   I remember thinking that I was not going to resign myself to this notion of ‘having’ or owning Lupus.  In reality of course, we do use this phraseology but I always try to say if asked about my medical history:  ”I have been told that I have Lupus” or “I received a diagnosis of….”  or “I have been informed that I have Lupus” (but Lupus doesn’t have me  - I love that saying).  I always knew that I could work on becoming healthy, even if it took a long time – it would be worth it to say “that was an experience I don’t want to repeat!”.

In my books, owning means, you have possession – the legal profession tells us that possession is 9/10th of the law.  I can acknowledge that I contracted a serious disease but owning means to me to hold on to, to keep safe and protectively guard.  No, that scenario didn’t fit with my desire to get healthy – I’m ready to shed this ‘affliction’ anytime.  And, no, psychologists and psychiatrists, I am not in denial…as I said I have been made painfully aware of the changes in my body’s ability to deal with new invaders and other antigens, swollen joints, organ disfunction and a host of other biological misdemeanours.  However, developing or cultivating a positive mentality can really affect your outcome – believing that you can change your life, your situation, your health really motivated me to seek out changes in diet, lifestyle, exercise and vocation to ensure a better future.

In neurolinguistics, there is an expression:  be careful what you ask for, you might just get it!  I know, it is easy to say be positive when you feel like you’ve been dragged around the block on a blanket with all the bruises and abrasions to prove it, but saying over and over again that you ‘have’ something you don’t want doesn’t give you permission to let go of that affirmation……so when I hear the expression or have the occasion so say that I ‘have’ Lupus, I set an intention for the meaning of ‘have’ = being in control of my outcome to have a healthy life, having the ability to overcome my symptoms…….just a thought

To Tell or Not!

For years I have been told:  ”You should write a book!” or “When will you write down what you have found out?”  ”Why don’t you share your experience with other people?”  ”There are people out there who need to know this stuff….”  Well, it just isn’t that simple folks!  First of all, it is quite a private subject, your health, unless you are Jack Layton leader of the Canadian NDP party and on the Federal election circuit – apparently the voting electorate think it is their right to know intimate details about his cancer and his hip surgery.  For the last 2 decades, much of the time, I have concealed the fact that I have Lupus from various groups and for good reason – you know the ones….employers, fitness centres, friends and even family members to an extent.  To let people know is like “coming out” – there are consequences.

As an employer, even though it may be considered to be discriminatory, it might just sway my opinion about hiring vs. not hiring and then if I hired someone with Lupus and found out later, I might wonder if I am getting performance jilted – would this person be able to perform better if they didn’t have Lupus?  I think that most of us think that we are not biased but in actuality, if we really got down to the truth, we are….everyone has beliefs, biases and doubts, it is just part of being diligent and protective. Businesses are looking for the ‘perfect’ employee to give them the highest possible results and knowing anything that might provide them with an inkling of doubt casts a shadow on the new prospect.  Now, I’m not advocating one way or the other, I’m just sayin’, in my experience, that perhaps discretion IS the key – don’t say if you don’t want to.  None of my employers knew, at least not until now

So what about Fitness Centres and Clubs?  Here  you have to be careful because they often ask you to fill out a registration form that includes questions on certain health topics and then ask you to sign that you have divulged information correctly.  The average member holder has very little knowledge of Lupus – oh, people have heard the word but if asked to describe what it is, you will often get some really artistic answers.  The biggest concern in public facilities where it comes to health is the spreading of contagion – external airborne types of bacteria and virus like influenza AND certain conditions that may be a cause for alarm under exertion.  Sometimes letting these organizations know that you ‘have’ Lupus elicits an instant and unnecessary concern from innocent ignorance and you may get the perception that untrue biases are being levied against you – real or perceived.  So I’m not advocating letting them know or not, I’m just sayin’, again, discretion is the key,  say if you want to – I just ignored that particular topic on the form.

Friends and Family are a special category altogether.  Let’s face it, you need them….they are your biggest support group.  But I wonder how many of you experienced just a teeny amount of rejection. It is not rejection of the mean and “I hate you, go away” kind, it is more one of, “I don’t understand why you have this and I don’t know what to do for you” type of reaction.  People get scared and they are not very well equipped to get the news that while you look well, you may end up in a wheelchair.  I have quite a few people in my “inner circle” who just really don’t want to talk about it and so they never ask how you are because that will mean trying to comment on something that makes THEM feel very uncomfortable and , well, they just don’t have an answer. People, no one does, not even the medical community!  I think that the peeps in your family group who care will show up and will be key advocates in your campaign to get well, same with your friends.  And there will be others that you just don’t provide the health and wellness updates to…conservative and efficient use of breath.

And, my favourite, if you are dating, when do you let that Lupus bomb drop into the scheme of things?  This is maybe the toughest…I mean, you want to be transparent with someone you really care about, right?  BUT the timing is really critical.   Too soon OR too late and you run the risk of having them turning and high-tailing it out of there…afterall, you may say to yourself, would they want to deal with the consequences of illness and corruption?  Do they think it is too much responsibility?  Look, there is absolutely no question, this IS information that has to transfer to the significant other in your life but this show and tell is one secret that, like a book, should have a decent Forward and hopefully land on sympathetic and supportive ears.  Those living with Lupus do have special considerations and this is NOT the time to be ‘hiding’ facts.  I have experienced the one that hightails it (really tough) and the opposite too….think of it this way, would you want to be with someone who just wants to run?  ’Telling’ – perhaps this could be viewed as being a good barometer of the nature of the person you are dating…compassion is truly the premium characteristic!

So, folks, it is a delicate management game.  It would be awesome if you could come out and make an announcement that you have Lupus and that this news would be received with positivity and then provide you with the security that nothing in your life will change but the reality is that it is disturbing to so many people in your sphere of influence beginning with YOU, your medical community, your family and friends, your employers, colleagues and associates.  But you cannot control how people will react.  One thing is for sure in life, change is inevitable.  If you happen to be delivered the news you ‘have’ Lupus or regardless of the label you get you can change that too and you can get well.   I’m just sayin’, telling….depends to whom and when but I think delicacy and discretion is key.

Over the last 15 – 20 years, I have learned so much about this disease, my body, what affects me, what triggers reactions and flares and most importantly, how I can manage these situations. Management is everything, even managing to whom you will divulge the status of your illness and when – when to tell.  I have been very fortunate to have a few close friends and family members who have continued to advocate for my recovery and insist that I tell you my story.  I look forward to developing my voice and sharing that with you and others like me.