It Takes a Special Person

I consider myself lucky.  I didn't always think like that.  In fact a few years ago, I had a major chip on my shoulder.  A chip I believed was justified because, well, my husband just didn't care that I was sick I couldn't have been more wrong.

Those of us know what it's like to live with a chronic illness day in and day out.  It's a battle and we muster what we can to get through it mostly only worrying about today.  We deal with the pains, the fatigue, even the more serious ailments if that's happening at the time but mostly it's just about getting through until tomorrow which will be better because, well, it has to. 

For most spouses and partners of people with chronic illness, it is not that cut and dry.  Living and loving someone whose faced with an uncertain future hits hard on them not only on a physical level but also on an emotional level.  Some may not show that emotion because they believe they must be the strong one.  They keep it in.  Unfortunately, sometimes we (the sick ones) mistake that for disregard.  Sometimes we need to step back and feel what it may be like in their shoes, the physical pain may not be there but their heart may be hurting out of helplessness or sympathy.  I know for me personally, it is so much easier for me to be in pain than to see the people I love in pain.

My husband may not outright ask me about how I'm feeling all the time (although he does ask me from time to time as I do him).  And you know unless I'm in really bad shape, I don't want it to be the topic of our conversations all the time.  A few examples of what he does do is remind me that I really should be in bed because I need my rest or rubs my back when he thinks I'm sleeping.

I have felt the guilt more than once just about being sick.  And even though I fall into the mild to moderate category, my disease is very unpredictable so I laid it all on the line for my husband about the worst possible things that could happen to me and the aftermath.  I gave him outs, outs, and more outs... I never wanted him to feel like he should be the one to suffer from this unfortunate situation.  That he could actually have a good life.  He was hurt, hurt that I ever could think that he would ever do that. "We will always be together" he told me.  Never again did I bring it up (not seriously anyway).

Unfortunately this isn't always the case.  I've had friends with illnesses that had spouses that just couldn't deal with it.  They were verbally and/or physically abusive, adulterers, or just took off and left all blaming the 'hardship of the disease'.  This breaks my heart but I hope my story encourages those who have been through those situations or have yet to meet that special person that there are wonderful people out there that look past all of that and see the PERSON and not the disease.

For those of you with loved ones - partners, spouses, family:
-Stop and let them know how much you appreciate them for just being them. 
-Don't let the disease be the 3rd wheel in your relationship, know it's there but don't let it have a spotlight.


  1. I wasn't diagnosed when I was married - my then husband just constantly complained about how lazy I was. (I never seemed to have the energy to do everything I ought to do.
    Mr Wonderful, who I've been dating for just over a year, is the complete opposite. He really does look out for me, and makes it clear that when I need a rest, he expects me to go and have a rest. He is one of the best things about my life right now.

  2. Health Blogging Month Day 18: A comment as a blog post. Pick someone else’s post (from the past or from today) and write a comment to them. Write that comment as your blog post for today. Link back to them to let them know you were inspired.

    It Takes a Special Person

    I've actually written a comment on this post before...

    What BD is talking about here is so very important.

    When you're diagnosed with something like lupus, it becomes such a big part of life that it can take over everything. It's hard to keep it in perspective. It's not just that lupies are afraid others won't love us when we're sick, we can feel guilty that they do love us. When I'm so limited in what I can do, when I don't earn a full income any more, when I feel like I don't have so much to offer any more, why would anyone care about me?

    And sometimes we find that people do give up on us - because they see the disease and our limitations. (This happens even before diagnosis, sometimes. My ex-husband simply believed I was incredibly lazy. Long after the divorce, when I was diagnosed, he asked me about my condition. I tried to explain how serious it was - and his response was to tell me that "everyone's dying, it's no big deal." Then when he was diagnosed with osteoarthritis in one shoulder he rang me in a panic wanting sympathy, telling me about this horrible condition that can't be cured, etc. It's apparently far worse than anything I can ever have gone through.)

    But strangely, wonderfully, there are people who see past our diseases, our limitations, our problems. There are people who still see us as who we are - and still find something in that to love.

    There is nothing more precious and wonderful than someone who loves me even knowing that the disease comes as part of the deal.

    If you have lupus, make sure to tell the people who love you just how important they are to you.

    If you love a lupie, know that on those worst days when the going is really tough on everyone, they are very painfully aware of the extra burden that puts on you.

    This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J