Autoimmune disorders aren’t always clear cut. Whether or not you have a suspected diagnosis, or have already been diagnosed, those who don’t have autoimmune issues won’t understand. It can make navigating things like work, school, and even family life difficult. Here are a few things to keep in mind that I have actually gone through and hopefully can help you too.
I keep having to explain my condition….
Hey, I get it. People keep asking you “why can’t you do this?”. and your response is always “Well, I have an autoimmune condition that…”. Once you it explain it to someone once, you don’t need to keep explaining it to them. People will either start to accept you as you are, or they will continue to keep asking you why why why… And while you feel you “owe” them an explanation, you don’t owe them anything.
I have a client of mine from my previous business. For months, she was pretty secretive about her “condition”. She did mention she would need my help randomly on afternoons for her doctors appointments (I was her babysitter). But I also never asked her what her condition was. Why? Because, it was none of my business (which, I’m sure when it comes to friends and acquaintances, it’s none of their business either). Until one day, I hadn’t heard from her in a while and she called me that she needed my help after a hospitalization. I asked her politely that if she didn’t mind telling me, I was curious at to what she had. I could tell in her response she was trying to keep it low key, almost like her condition was an embarrassment. When she told me I very openly told her about my Fibromyalgia. Now we can connect on another level, and I’m so grateful she told me because now I know how I can better help her during times she’s struggling.
All they ever talk about is their condition!
There are those that want to keep their condition hidden, and then there are those that want to tell EVERYONE. You know those people, right? Anyone who can turn any conversation into their medical ailments. Because it’s THEIR condition. Almost like they are identifying with their condition only. I know for a long time after my diagnosis, this became me. Because what happens is you get your diagnosis, and it’s almost like you BECOME the diagnosis. You identify with it. You’ve done so much research, maybe attended health classes, and even started seeking out forums to connect with people in. You are eating, breathing, and living this diagnosis. But you have to realize as well that while this is PART of you, it’s not COMPLETELY you. Take a break from turning all the stories back onto yourself. Talk about other common interests (yes, I am a health coach, but I also enjoy reading, crocheting, watching crime dramas, and pets). Once you stop living behind just your diagnosis, new doors will open for you.
I’m sorry, but I’m going to have to cancel our plans.
Those who don’t have autoimmune disorder typically don’t understand this aspect. Here is what I have been told in the past:
- But it’s just dinner! You’ll be fine for another 30 minutes.
- You know, if you were just going to cancel I could have planned something else.
- This is the second time you’ve cancelled on me. why do you keep bailing out on me?
- Let me guess, you ended up taking on an extra shift at work, didn’t you…
- I guess you just don’t value our friendship the way I thought you did
PLEASE LOOK CAREFULLY! Notice all the statements I mentioned above all use “you” language. Not very compassionate. You’ll be fine, you cancelled, you don’t value. Please try not to take these to heart. When you use “you” language, you place blame. Yes, your friends and family may blame you for cancelling, or changing plans, or be frustrated that now their plan got screwed up as well. Don’t take it to heart! If I did I would have lost so many “friends”! YOU (as the one reading this!) don’t need to apologize. You are taking care of yourself the best way you know how. And if that means sometimes cancelling that evening drink at the bar with a coworker, or just saying “No, I can’t go tonight” and then you go home and sit on the couch binge watching Netflix. Don’t apologize for taking care of yourself. There is no need for “I’m sorry’s”. A simple – “Hey, tonight won’t work – let’s reschedule!” is completely fine and please don’t ever feel like you need to explain yourself for cancelling. Those who matter, won’t ask questions and will still value your friendship, despite the occasional cancellation.
But you don’t look sick! Fibromyalgia is a made up disease anyways…
But you look healthy! Here’s the deal with some autoimmune disorders – they are what is knows an invisible illnesses. Just because you LOOK okay (and granted, sometimes we don’t look okay and that’s fine too!) doesn’t mean you’re not sick. Just because your body doesn’t look like it’s attacking itself doesn’t mean you are not sick. As for it being a “made up” disease? Think again. Just because certain tests have some back negative, doesn’t mean that the pain isn’t real. When I did extensive testing my second round with Fibromyalgia back in 2011, the rheumatologist just looked at me and said “Well, your tests are negative. Here is a consult for psych, because there is nothing wrong with you.” I literally burst out in tears. “What do you mean NOTHING is wrong! I’m not making this sh*t up, maybe YOU just didn’t do the right tests” (Yes, I said that to her. Because I was so tired of not being BELIEVED.) I’ve even lost friendships because of it being “made up”. Well, you know what? 10 million people in the U.S. can’t just be all “wrong”.
You should try (insert miracle cure here)! It worked for my friend!
Here’s the thing – don’t you think if there WAS a miracle cure, we would have been cured already? While some things people say can be helpful (gentle yoga, essential oils, CBD is the newest trend right now…) let me put it to you bluntly – THESE ARE NOT CURES. THERE IS NO CURE! The best “treatment” (and I use that loosely, as I am not a doctor by any standards) for Fibromyalgia is management of symptoms. How do you manage your symptoms?
Drop us a line and let us know what you have found to help your symptoms (and you can book a free 15 minute connection call here to connect with us one on one!)