Lupus, Hard Changes, Adapting and Impacting

When your life changes due to health or other circumstances, it can be hard for those who aren’t affected by the change to understand just how much this impacts you. Some times this can lead to interesting interactions. Other times it can lead to hurtful words, accusations and misunderstandings. Typically it isn’t out of malice, but rather coming from a place which lacks understanding and compassion.

I’m sure there are times my friends just want to smack me and call me lazy when I tell them I just don’t have the energy to do something I had committed to do earlier. I get that. I mean before I was diagnosed with lupus, before the symptoms interfered with my life, I do recall times when I’d think to myself “just plead a headache or a night with no sleep” when the time came to actually do whatever it was I had committed to. It isn’t wrong, it’s human. But like most humans I would simply go ahead and deal with my commitments. Typically once you were part way into them, you’d realize that it was a good thing you didn’t’ beg off.

Lupus, in all its flaring glory, has provided me with a legitimate and very real reason to have to cancel out of commitments I made. And it gets old fast. I know it gets old with friends, and I have to be honest here, it gets old having to say it all the time. So sometimes I just try to push through and keep the promises etc. that I’ve made and cross swollen fingers that it won’t leave me in horrible shape afterwards.

Beloved, of course, bears the brunt of these things. From having to cancel things at the last minute to listing all of the days aches and pains to just not doing things. He has to put up with the bulk of that. He didn’t ask for it when we met, but he was aware, to some degree, what he was getting in to. After all when you first meet someone you tend to put your best foot forward, and when things are going along swimmingly you try to keep the best foot forward for as long as you can. Once, after I honestly and candidly answered his question about how my day was, he turned and looked at me with a creased forward and a frown firm upon his face. He told me it was hard to hear the negatives all the time, it was more than enough for him to see me struggle. That hurt more than a smack and it took me a while to realize that his life had changed when he invited me into it. But his life also had some normalcy that didn’t involve sorting out clothing based on pain and flexibility of the day.

I have had the honor of listening to Beloved explain to one of his close friends how much lupus has impacted his life as well as mine. Beloved talked about missing out on social functions because I was unable to go. Not knowing what kind of mood or day I would have first thing in the morning, and if he would feel guilty for feeling fine while I wasn’t in the same place. And then he said something interesting. He said that he couldn’t imagine having to change his career goals, his hobbies and such because of an illness. He couldn’t fathom how an illness, especially an invisible one such as lupus, could strip your life down to small things and alter not just how you view yourself, but how others view you as well.

It made me realize that while at times he gets tired of the lack of consistency that can come with lupus, he also gets that the woman in his life now, is not the same woman before she became sick. And he’s okay with that. He gets that as hard as it is for him to watch me struggle; I have had bigger struggles such as coming to terms with life with lupus. He may have had to listen to me complain about being in pain or not being able to tie my own shoes, but he also gets that he hasn’t had to rely on someone else to do something as simple as tying a shoe since he was a wee boy, or having to carry out basic things like brushing your teeth while your whole body is in so much pain you aren’t even sure you can hold a toothbrush.

So while there are days I wonder how much Beloved actually understands when it comes to my health issues, I do not for a second doubt that he does understand that it has changed my life and continues to change my life. Which means changes for him too


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