You know the drill. Before I get started, I just want to get this out of the way:
I am not a health professional - medical, mental or otherwise. This blog post and all of the content on www.sagewolfsong.com is NOT medical advice, treatment, cure, diagnosis or anything along those lines. I am simply a woman who's fought her medical history and come out stronger for it.
Chronic illness is a part of my life. But it doesn't own me. I do my best not to let it control me. It doesn't define me.
It does, however, like to make relationships a pain in the ass. Because, after almost a decade of pain, fatigue and illness, I've realized that no one understands my situation, unless they're going through it, too.
I'm going to lay this on the line right now: It took YEARS for Hubby and Daughter to really understand just how much of a challenge daily life was for me. It didn't actually sink in for Hubby until he started having migraines himself (his first landed him in the hospital, and it took 3 days for doctors to figure out what was going on). It sunk in further when it was me in the hospital, and a pseudoseizure episode left me with no memory of the previous 20 years - I had no idea who my husband or sister were, and couldn't wrap my head around why my mom looked so OLD.
Hubby and I have had lots of conversations in the past 8 years, since I first got sick. Some, more intense than others; others, louder than we'd like.
And I talk to lots of women (and the occasional man) about the struggles we share, and what we wish our significant others (family, partners, best friends) could understand about what we go through.
In that spirit, I'm sharing the top 5 things I hear that other chronic illness patients wish our SO's understood.
- We still love you. We might not be up to shopping all day, regular intimacy, sitting through hours of football in a crowded stadium, or staying up late every night, but the fact that we love you is still very true. In fact, it adds to the physical pain we feel, because we know we're letting you down. We don't want to. But it's how things are right now.
- We're doing the best we can. Chronic illness takes a lot out of anyone. We might not keep up the house like we used to, or cook elaborate meals (god, I miss baking!). It doesn't mean we don't want to, but we'd like to be able to spend time with you, without being in utter agony (or medicated to the point of delirium).
- We need your support. We're facing a lot of changes, on a daily basis. One day, we might feel fabulous and the next, we feel like crap. This can change from hour to hour, in fact. Don't assume that because we look fine we ARE fine. We become adept at pretending, because most people don't understand, and it's exhausting to explain it over and over. We need a few safe places where we can honestly say, "I can't keep going." The best gift Hubby ever gave me, was freedom and support when I say "I need to go home and lay down." His understanding that my limits come up hard and fast was a huge blessing in our marriage. What I WANT to do, and what I CAN do, are sometimes two very different things.
- We miss our old lives. Chronic illness and pain are life altering, and we didn't ask for this. We know you miss the way things used to be - we do, too. But it serves no one to stay stuck in reverse. Let's work together and find some new things that we can do together.
- We're pissed off that our old life is gone. Trust me. No one hates how chronic illness forces you to change your life more than the person that has it. In fact, sometimes, we're so annoyed with how much we CAN'T do anymore, that it spills over and we lash out at you. Have patience. Ask what we need. I can't count the number of times I've had such a hard day, and gotten so little done, due to pain, and then taken it out on Hubby when he comes home and asks why I didn't get XYZ done. I've already been in tears that day because it just hurts so DAMN much. I've already beaten myself up for the things I didn't get done. He's learned that it's best to ask what I need, which is very often a hug and someone to hold me while I cry buckets of angry tears.
It's been a rough road. Thankfully, Hubby and Daughter and I have mostly figured out ways to understand each other's burdens. And if I've done what I set out to do in this post, you can relate, and you have something to share with those close to you who are having difficulty putting this all together.