Support Doesn’t Come Easy

Probably one of the most important weapons in my private anti-lupus arsenal are my friends and family. During the whole mess of finding suitable living arrangements on a microscopic budget, they’ve all been totally supportive every step of the way. One of my cousins and his wife got some phone numbers for me of buildings that might have rentals in their area, my dad offered to drive me to see apartments and my mom is constantly reminding me that there’s always a room back at her house for me if I need it. Me and friends are all keeping each other as sane and calm as possible (usually with the help of some alcohol and television), exchanging apartment listings and generally venting to each other.

One of the toughest things about chronic illness is trying to explain it to others who don’t- who can’t- understand what you’re going through. None of my friends or family has lupus. None of them have seen as many hospital rooms as I have. None of them take 5 medications a day. None of them have ever been on steroids, lost their hair, wildly gain or lose weight, is constantly tired or has constant pain. At first, in the early days of my diagnosis, my own mother didn’t want to know about it- she implied it was just me being lazy and would tell me to tough it out, not to “surrender” to a tiny little ache.

It took time and more than one hospital emergency for her to realize that what I was experiencing was real, medically measurable and dangerous. Of course, now she tends to get overprotective- but that’s another rant for another day. At first, your friends and family might doubt you, might even tell you that you’re making symptoms up. It’s hurtful, but it’s also important to understand that it might not be personal.

What do I mean? Well, here are a couple of things that might be going through the minds of the people you love:

  • Fear. Lupus is still not really talked about or as well known in general- and the unknown always scares the living daylights out of people.
  • Denial. This ties in with fear- it’s easier to tell yourself that things just can’t be as bad the doctors say or that you’re exaggerating symptoms, rather than face the fact that a loved one has a potentially serious health problem.
  • Misinformation. Maybe somewhere, somehow, your friend heard a myth about what Lupus is. While it was easy to dismiss at the time, now the little lie has come back. It might be the only thing about Lupus your friend has ever heard and, having nothing else to go on, that little lie becomes a truth in their mind.
  • Guilt. When I was first diagnosed, the doctor suggested that my first flare might have been triggered by too much sunlight or stress. My mother- who had always pushed me to get some color in my pasty white skin- immediately felt responsible. To make herself feel less guilty, she would pretend that I was fine- that my chronic fatigue was a result of just being lazy.

It’s easy to get so swept up with how lupus is affecting us as patients, that it’s easy to forget that out friends and family are being affected as well. It will take just as much time, care and effort for them to adjust as it does for us. And, some people might not want to adjust. Some of your friends and family might find it easier to walk away from you. They might blame you- saying that you aren’t “fun” anymore, or that you’ve “changed”.

Remember: Change is not a dirty word. (Burn it in your brain, write it on a t-shirt, if nothing else, don’t forget!)

However change can be scary and some of your friends and family may find that they can’t deal, can’t be flexible, can’t adjust. It’s painful, but the ones who stick by you through the thick as well as the thin- those are your real friends. And there are people out there who, even if they have no idea what you go through every day, will see more in you than a medical diagnosis. They’ll see a sensible person or a hilarious joker or an artistic flirt or a wild dreamer or the king of karaoke or a fantastic cook.

Lupus Now had a great article about this a few years back (if I find the exact issue, I’ll put it up for those interested in the getting the backcopy), though it applied more to dating than friendships. The same thought applies though- if a person dumps you at the first sign of trouble, then how reliable are they? What kind of friend/lover are they? Would they have stuck around through other rough times? The article mentioned lupus as a built-in detector that helps weed out people who just aren’t fit friends. I think this is a good way of looking at it.

Anyone can have fair-weather friends. But not everyone has friends like I have- who, when I came back from a hospital stay left me a big Welcome Back sign at my dorm room- taped to a huge traffic cone they had stolen from a construction site nearby.

Now, that’s my kind of friendship. 🙂

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