Dating can be difficult enough as it is, but when you add into the mix something like health problems, especially for someone in their 20's and 30's, then you have a whole lot of room for problems entering the mix. You like them, you want them to like you, and you'd like to be able to think about the future. When you have chronic illness in your life, the future contains many more unknowns than the average person. Sure health problems can surface in anyones future, but those with a chronic illness have a name already given to that possibility and the added stress of knowing what those possible complications could be. We've been handed a roadmap of symptoms, risk factors, complications and side effects to look out for. It's hard enough for us to think about encountering them. Explaining all of that to someone we hope to explore the possibility of a future with? Well, that's just plain scary. We've had time to think about it all, to wonder and to research, and get used to the idea of what we're experiencing and where that may lead. Most of us have come to grips with the idea and are doing our best to stay positive and be "normal".
Personally, I don't see my disease as an issue so much as a challenge. Sadly, not everyone sees it that way. You'll encounter people who don't understand, and who can't get past the idea of the challenges you may face in your health to the blessings you could share in a relationship. I'm not saying I have the answers. I'm positive I don't. It won't be easy, but I think things could be easier than we often make it out to be. And sometimes misguided anger and frustration can build and add to the challenges and discoveries that come with any relationship, making it seem harder than it needs to be. Making you wonder if the extra effort and turmoil is worth it.
I can tell you one thing I know from experience however. I can't tell you if working through it and trying to work past it is worth it or not, because I never got the chance to find out. Things ended with Brian before I was able to see how good it could have been. Before either of us had had a chance to find out if a future was something we wanted to pursue. And that is what hurts the most. The not knowing what may have happened if we hadn't given up. Wondering, three years later, where I may be today if things had gone differently then. It was early in the relationship. We hadn't even met in person yet. I'd never heard his voice. Our only communication had been our daily, and sometimes more than once a day conversations on the computer. And yet seeing he was there, and having those conversations made me happy. It seemed like we could talk for hours. I'd shared more with him about myself and my past than I had with even my best friend. But I'd not yet told him I was sick. I didn't know how he'd react and that scared me. But mostly because I don't feel like I'm sick until a flare hits. I don't think of myself as a "sick" person, as though my disease defines me. Because it doesn't. Its something that I have to live with, but I can basically ignore its existence and not think about it as something that matters. To me its just another reality to what I live with everyday. I've gotten used to the pain, so much so that I don't even notice it much anymore until it gets better and I notice its absence, or it gets worse and I feel like crap.
I forget sometimes that I've had roughly 12 years to get used to the idea. 12 years of research and discoveries, 12 years of fighting back the fear of what may happen and getting used to the idea that I'll never know how bad it will get until it happens. My biggest regret? I didn't give him the time he needed to process the information. I didn't wait to see how he'd react and what he'd have to say. I took his silence as rejection, and I reacted. Admittedly not well. And I really wish I'd waited longer and seen if he'd have responded how I hoped he would. Instead I pushed. I let the fear of what I thought was happening override my good sense and made that fear a reality. And while knowing it was over was painful, what hurt even more was not knowing why. Wondering if it was my own poor judgement and how I handled things, or the fact that he couldn't come to grips with it all. There was no closure, it was just over. And I've let that experience color every relationship I've had since. Or more to the point, I've let it close me off from ever getting that close to someone again. I've been too afraid that I'd again feel the rejection from someone I was starting to care about over something I had absolutely no control over. I've been too afraid to feel like that again that I haven't let myself trust someone enough to be able to tell me it didn't matter. And I'm beginning to wonder if its all been worth it. Because the pain of rejection can't be worse than the pain of feeling so alone. Of feeling like you'll never find someone who will be able to love you enough that everything else doesn't matter.
So please, take my advice. Don't push away what you desperately wish you could hold onto. Give them the time they need to think about it all and a chance to show you that being with you is more important that not knowing how your health may impact your relationship and your future. Because if we're honest, those uncertainties are there for any relationship, whether we know we're sick now or not. Sickness holds to no ones timetable, it doesn't care about our goals or ambitions, it doesn't wait for us to have time to deal with it or when things in life calm down or are less stressful. In fact, stress often makes things worse and can trigger a flare up. It can strike without notice and it can build gradually or hit you so hard you didn't see it coming.
The point is this. We all handle uncertainty in our own way. We've all been there. You get your diagnosis and type it into that search engine and wait for the "answers" you crave. But then, we also all know that only a small margin of the information we'll uncover is fact. The rest is just opinion and speculation. Oftentimes from those who don't even have a first person view or experience with what they're discussing. Add to that the fact that we've had the (hopefully) added blessing of dr appointments and referrals that have given us a way to get good and real information and a chance to ask our questions and have them answered. You can see where your significant other, having none of those advantages is left only with the answers on his screen.
Imagine for a moment how scary it would be to be on the other side of things. You're seeing someone you're starting to care about, thinking you know all the important things and that the other details will fall in place as you go. You're learning more about each other with every passing conversation and you're really liking where things are going. You're starting to think about the future. And suddenly that picture you've been building in your mind gets shattered. You've just been given information you never expected to hear. Your seemingly healthy SO just informed you that he/she has a condition for which there is no cure, is only sometimes managed well, and can often change direction without notice or warning. It could mean a few days in bed or a week in the hospital. Your browser window opens up a slew of nightmare scenarios and you don't know what to think. You don't know what to believe. You don't know how to react. What do you do? Having already been on our own side of it all, I'm sure you join me in thinking you'd give a resounding "we'll get through this together, it doesn't matter. I still care." But if we didn't have our own health problems in our past to color how we think we'd react, do we really know what we'd say? Is it fair to ask someone else to be able to handle the shock of first hearing that you have a condition, labeled by many a disease...(oh, how I hate that word...) and react to it well?
Remember your own reaction to finally having your condition given a name? For me, its happened twice. I was misdiagnosed 12 years ago and only given a proper diagnosis three years ago. I had nine years to get used to one disease only to have that knowledge and reality abruptly and rudely changed without warning. Replaced instead with something even more unknown and a future even more uncertain. I was angry. Upset that what I thought was real was not, and that I'd been treated for so long for something I didn't even have. I was disgusted with the idea that there was very little out there to discover on my new diagnosis. Bitter about the fact that I had new things to fear, new uncertainties that could creep up and sideline me without warning. I saw the limited information as a challenge for a while, searching nonstop for information that may give me a glimpse at what I may be facing. Fear at realizing there was little out there because there was little to know. But for us, that name, however restricting and scary, was also a relief. Because we'd known for some time that something was wrong, we just didn't know what. Now we had something to fight. Something to blame. An answer, however limited, for what we've been experiencing.
Now imagine hearing about your SO's diagnosis without all of that preceding it all. No warnings, no inkling that something may be wrong. For all you know you're dating a perfectly healthy individual, because that is what we portray to the world. We show no pain, no fear, no hint that something may not be right. We ignore the pain and go on with our lives, because we know its not going away, and complaining about it isn't going to make it better. They're given this bombshell of information and are faced with us, waiting for a reaction. Taught by experience to fear the worst and expect very little from those we tell. So here is my advice. Give them space and give them time. Let them know that you understand that its a lot to take in and a lot to accept. Let them know that you are there to answer any and all questions they have. Listen to what they actually have to say and try not to read too much between the silence and the questions. Let them process what you've told them and what they will discover on their own. And above all, trust them to be the kind of person you've thought them to be all along. Do not assume to know what they are thinking or try to interpret their silence or try to figure out what their questions may mean. Take it all as it comes and be patient. Let them tell/show you how they feel.
As for those of you who are faced with the information that someone you care about is "sick", here is my advice for you:
- We're just as scared about how you will react as you are about what it all means. Please don't leave us hanging. Let us know that you need time to process it all and to think about it. If you know right away that its not something you want to have to live with, just tell us. We're adults and we can handle it, don't just drop off the planet and wait for us to get the hint - tell us the truth.
- Ask questions. We know you're going to have a million of them. Don't be afraid to ask about what you've read or what you've been told. Understand that a lot of what you're going to find on the internet is going to be uncommon or untrue. For many of us, our conditions may manifest differently case to case. Meaning that what may be true for one person with MCTD may be completely off base for me. Its considered an "overlap" disease meaning it may exhibit symptoms and disease activity from more than one disease, and as such may be different person to person. Don't be afraid to tell us that you don't understand something and let us know if you want to know more. We'll be glad to try to explain.
- Listen. We know that what we're telling you is overwhelming and often potentially alarming. If our answers to your questions only leave you with more questions, don't be afraid to tell us if you don't understand what we told you or to ask followup questions. We've become semi-adept at doctor speak and the lingo of the waiting room. We forget sometimes that others do not have that same understanding and can continue on not realizing that you got lost back in the conversation somewhere when some medical term or another left you wondering what just happened. We really do realize that degenerative, immunosuppressant, and a whole host of other terminology is not in commonly used in others' vocabulary. Stop us when we fall into our standard "text" of an explanation and we venture into territory you don't recognize. Understand that we've explained our condition so many times that we do have a rote answer to most anything. If it sounds rehearsed, its because we've answered it before and we probably are giving an answer we've nailed down and use everytime we're asked. Don't be offended. Show us that you really do care about the answer and really want to know. That you aren't just asking because you think you have to. We'll know if you're being sincere and we'll respond to that. Let us know if you feel like you're not being heard and if you think we're not taking your questions seriously.
- Pay attention to what we're telling you and also to what we may not be saying. Some things that are happening may not seem like a big deal to us, because we're used to it. We don't always realize that we need to explain why or how something is hard for us to do, and its often embarrassing to admit to our own limitations. Know that we're just as unsure about what will happen and how this will affect the future as you are.
- Be honest. Tell us how you're feeling. We're not mind readers, we don't know what you're thinking and what you're afraid of. We have our own insecurities and fears where our conditions are concerned, we know that you are going to have some of your own. We can't help you to understand what we're going through if we don't know what it is you aren't sure of or want to know more about. We want to be there for you emotionally as much as you want to be strong for us. Don't let how you think your emotions will make us feel keep you from expressing them. Don't close yourself off from us when we're most unsure of how you will react to everything we are telling you.
- Be there. Sometimes just your presence is enough to make us feel better. Just knowing that you care and wish you could do something to make us feel better is enough. We know there isn't much you can do, but knowing that you care is a great help in and of itself. Being sick is no fun. Feeling like you're going through it alone is terrifying. Be the shoulder we can cry on, the confidant we can share our fears and insecurities with. Know that we're not feeling well and will probably ramble and often not make sense. We're likely to get angry, with our situation, how we feel, and the fact that there is little relief in the midst of a really bad flare up. Sometimes you just have to wait for it to be over. Its frustrating and if we seem to take it out on you, please don't take it personally. Please forgive any and all emotional outbursts, bouts of complaining and whining when sick. Don't let us chase you away, because being there really does mean a lot. Especially when we know we're not easy to be around.
- Understand that no matter how much you want to, you'll never completely understand how we feel and what we're going through. We can try to explain it but unless you've experienced it often times what we're describing won't make sense. And thats ok. Just knowing that you're trying and want to understand means a lot. We have our own support system that we've built around us, my own was found out in the world of twitter. An unlikely but blessed discovery of those who are experiencing the same things that I am. Who I can talk to and listen to and know that I'm not alone. Sometimes just that realization is enough to make us feel better. But don't let that make you feel insignificant. We know we're not alone physically. We know that you're there. But there are some things that you won't be able to give us no matter how much you want to. Sometimes sympathy is rejected because we're overwhelmed with it from everywhere we turn. We want to interact with someone who can empathize with us, who is there with us physically and emotionally and can give us the support and understanding that only someone with our shared experience can give.
- Let us vent our frustrations (without fear of how you'll respond). We know there's nothing you can do to help us feel better and thats ok. Sometimes having someone listen and let you cry is all we really need. We spend so much time compartmentalizing everything we're going through, overanalyzing how we think someone will respond or what we should share. Give us the gift of knowing that we can let that out without having to self-edit or even be rational. Knowing you're there to listen and wipe our tears is sometimes enough to help us get through what we're feeling. Being able to verbalize it and let it out is a huge relief.
Know that mistakes will happen, on both our sides and that no matter what it may appear on the surface, we really are trying. We're just as unsure of how to navigate through this added challenge to a relationship as you are. We're hoping that you will be the person that will break the trend of past relationships and be the one to stick it out. We're trying desperately to give you a chance to prove you will be there for us. But we're just as afraid to hold onto that hope and be disappointed should it not work out. We wish we had the opportunity to go through life meeting people in the way most dating couples do, without having to worry about how our health and its shifting stability can disarm even the most charming and determined of suitors. We've seen those we thought would stay run for the hills. Please don't think less of us for trying to protect ourselves from having it happen again. And don't let our cautious optimism scare you away. Keep up your determined pursuit and charm away. Inside we're all just little girls waiting for our happy ending.