But First We Need to Talk

There is a list of ‘Things everyone has a right to know’ when dating. Sure, there are no brainers like; whether or not someone is married or bi-sexual or suffering from a mental, sexual, or an incurable disease. I have Lupus; a chronic autoimmune disorder that makes me vulnerable to, well – everything. I was also just recently diagnosed with Fibromyalgia; a rheumatic condition that produces widespread muscle and joint pain as well as fatigue and they definitely go on that list. This is information that someone interested in getting to know me has a right to know. Getting close to me means more than dealing with “that special time of the month; it means witnessing pain, both mental and physical and confronting mortality.

I use to hide my illness from people. I wouldn’t let anyone see me take medication. I would force energy I didn’t have to conceal how tired I was. I would have excuses as to why my knee was bandaged. I didn’t want to explain why I couldn’t be out in the sun because I was allergic to it. I wanted to feel normal, I know what that feels like and I miss it. Finally, the stress from all the energy I was burning up trying to deny the truth from myself and hide if from others was making me sicker so I had to grasp the concept that I was not normal and I needed to accept it.

By most people’s standards, I am considered attractive; beautiful even. I look much younger than I am and I have a ‘nice’ body – petite but leggy, slim with great muscle tone. I am Eye Candy. Genetics gave me good looks and the ability to maintain a size 2, and then cancels it out by giving me a disease that has sometimes made me into a monster. It’s ironic and I learned looks mean absolutely nothing; it can be snatched away – without notice and without permission. With that in mind, I take it with a grain of salt when a guy tells me how beautiful I am. Men will tell you what they think you want to hear. I know that if those same men saw me without the illusion I have created, they would not look twice; well perhaps just to make sure their eyes aren’t deceiving them.

Navigating intimate relationships has always been tricky and scary for me. When I learned that I had this (invisible) disease, I was in a long-term relationship and after standing by me during my initial two-week hospital stay, he broke up with me the day after I got out of the hospital. I didn’t see it coming. I learned three things that day:

1. I had no support system: He was my sole support system (Dysfunctional family – another topic altogether) I couldn’t depend on anyone to be there for me, so I was going to have to be stronger than I was.

2. My situation was an undesirable one – Whatever excuse he had for suddenly not wanting to be with me (we had been together for 1 ½ years and were practically living together) existed prior to my health problems having a name, so this was clearly a “deal breaker.”

3. You never really know a person until there is adversity: I thought I knew this person -- I loved him, he literally fought for our relationship, he rescued me, he was my knight in shining armor - and he was stupid hot.

Because of the aforementioned reasons, I tend to get the “talk” out of the way before too many emotions and attachments get in the way. The ‘talk’ usually goes something like this:

Him: I really enjoy your company. It’s difficult to find a sexy and intelligent woman in one complete package but I think you got it down. I’ve been thinking about kissing you all night (actually, I do get that a lot. Thanks for the lips mom). I immediately project to us kissing and then that turning into an out of control make out session - with the lights on and I decide it is time for the “There’s something I haven’t told you” talk.

Me: Wow! Well, thank you. I enjoy your company as well, you’re funny and extremely attractive. I can feel the chemistry and I feel like has progressed to a point where – to be fair –you should know a few more things about me. I have a disease called lupus, a chronic disorder that compromises the immune system and can attack your joints, skin, and organs. (Breath…)

Him: Ok…Wow! So what exactly is that? Is it contagious?

Me: (disgusted sniff) Of course it’s not contagious silly. It is thought to be either environmental or genetic or both. It is hereditary in my case. I have arthritis, a lot of allergies that manifest themselves through my skin: the sun, wheat, dairy, oats, cherries, maybe seafood, etc., etc. I have had four hip replacements and a hysterectomy. Piece of cake.

Him: Well are you going to be okay?

Me: Oh I feel fine. I just thought that you should know. I have some disfigurements and scars that can be alarming to some. Yes, the silhouette is fabulous, but it’s multi-dimensional, not a smooth one toned canvas. I don’t want either of us to waste our time if this goes against your criteria. It’s only fair and I think you should make an informed decision if you’re considering getting involved in anyway. You should educate yourself a bit before going forward. Any questions?

And… scene!

It’s awkward but it has to be done. It’s important to weed out undesirable people when you’re a normal person, imagine having to do it when you’re the undesirable one. I do get some takers who are curious and will go to the next round. Some are curious - they want to see and after their curiosity has been quenched, they are never seen or heard from again. I have had successful relationships with this disease. I was married for eight years to a man that married me at 84 lbs. and practically no hair and he loved me until he didn’t. My most recent one was with a man that lived in another state and he treated me like I was the most beautiful woman in the world. He wasn’t interested in having a ‘real relationship’ and I do have to wonder if my condition isn’t part of that. In his defense, he says his commitment issues have more to do with his disease (recovering alcoholic) than mine. You can imagine how disappointing it can be to be involved with someone who can actually “see you” and not be able to take it to another level.

I’ve been living with lupus for twenty-one years and this is what I have learned along the way:

Too Much Information: I tend to give general information about my illness and then reveal more if they ask questions. I would not suggest giving a blow-by-blow report; the results are not pretty.

Honey, I Have A Headache: I only mention not feeling well if it conflicts with an activity. If I’m tired and just going for a long drive, I don’t say anything. However, if the activity is hiking and I’m fatigued and arthritic, I will mention that. Plus, it’s a great way to get out of hiking.

I Am Frankenstein: This is difficult for me. I tend to mention surgeries because my surgery scars are obvious. I also have hyper-pigmentation from flares and allergic reactions and I find myself explaining my war wounds early on. If you’re a guy that is turned off my long scars on otherwise nice looking buttocks, then I’m not your girl.

Numero Uno: Getting others to understand and respect my condition has been painful. My diagnosis came with immediate restrictions; some I adhere to, some I don’t probably because I was diagnosed at a young age (twenty-two) and being a social person, I didn’t want to be left out of anything. Once people know about me and my affliction they start to either exclude me from certain things; assuming that just because I can’t play volley ball, I wouldn’t like to watch a game. Some don’t want to be reminded of your poor health because it is a constant reminder that it could happen to them. Not everyone is capable of remembering that you are a person, with hopes and dreams and desires and the ability to rise about the situation. Those who love you will respect your situation and those who deem you “no fun” will bolt. See ya!

Can I Get You Anything Else?: I had to learn to let people help me. I have always had to be independent and when I did let my guard down and allow someone to take on my burden, it wasn’t respected. If you have a support system, take it and run. Not everyone has one and it is priceless!

As time goes by, I find myself resigned to the fact that I may have become a little commitment phobic because of my romantic experiences. I am still trying to balance my needs and still foster healthy relationships but then again, who isn’t? I am a giver by nature and it’s very easy for me to put others interest ahead of my own. I have learned to be selfish but in a good way. In the meantime, I’m just going to continue playing the game called life.