Invisible conditions really suck. I really can’t describe it any better because if your arm is in a cast, everyone knows you’ve broken your arm and can’t use it. If you’re sitting in a wheel chair or using a cane, everyone knows that you have difficulty walking. If you use a white cane, everyone knows you’re blind. In all of these cases of visible disability, the world is more than happy to empathize with you and make accommodations. However, if you’re relatively healthy looking or in our cases, if you’re overweight or obese, the world seems to think you’re a lazy sod and you’re just trying to take advantage of everyone around you.
Those of us who have lipedema already know this song and dance, it’s one of the many invisible conditions out there. We obviously did this to ourselves and to cure our pain and sorrow all we need to do is stop eating so much and exercise more since we all love to sit in front of the TV all day and eat bonbons and ice cream. However, a lipedema sufferer knows that this isn’t true and in fact, I believe most of us go to absurd lengths to try to prove to everyone around us that we’re pulling our weight.
We plaster on that happy face when really what we want to do is smash someone’s face in for unsolicited advice, while we quietly suffer in pain. We go and do things with our family and friends, and try to appear to be enjoying ourselves when we’re really not. We don’t want to be known as that person who’s always grumpy and never wants to do things. We don’t want to be ignored or forgotten about by family or friends either so we keep forcing ourselves to put our big girl panties on and suffer through it. There are days where it’s all we can do to is try to make it through the day one hour at a time and revel in the fact when we can take our compression off and just go to bed.
To make matters more complicated, a lot of us have other invisible conditions and diseases. I personally suffer from some sort of mystery back problem that cropped up early 2015 that I really thought was all due to my weight. When I was diagnosed in fall 2015, I was certain liposuction would get the weight off so I could move better and the crippling back pain would disappear. A year and a half later, most of the weight is off and the back problem got worse and I can barely walk. All the symptoms present itself as lumbar spinal stenosis so off to a neurologist to get an MRI and guess what…
Instead of having a name for what’s wrong and a way to fix it, I’m back to mystery back condition. An invisible condition of invisible conditions.
Exercise doesn’t help it. Physical therapy doesn’t help it. Manual therapy via a chiropractor doesn’t help it. Pain killers don’t dull the pain, they barely scratch the surface unless I want something that makes me a zombie.
So now I’m back to having to put my big girl panties on and just make it through every day because nobody really knows how much pain I’m in. I’m kind of like a cat in that way, I have a freakishly high pain tolerance and just get on with it. I guess that’s my American upbringing in that you just do what you have to do to make it no matter how much it costs you in your happiness.
It’s funny, I was talking to a good friend the other day that I don’t get to see often. He knows I’ve been going through surgery and I was telling him about my back issues. That day I wasn’t moving so well but since I was at a friend’s place for the last summer barbecue, that smile was plastered on my face. What he said actually has had a pretty big impact on me, and not in a good way (although he meant it as a complement). He said that no matter how shitty things must be, or how much pain I must be in, I always have a smile on my face and roll with it.
That’s one of my super powers, just rolling with it. We can also add the happy face no matter how much pain you’re in to that list as well.
Here’s the thing, I’m not happy. I hurt. However, the moment I start showing how much I hurt I’m being over dramatic. I’m being selfish. I’m being a downer and party pooper. I should think about others, I shouldn’t be such a grump. I shouldn’t let life get me down. There’s all the things I shouldn’t be and I don’t get a pass.
Ironically though, here in the Netherlands, if I’d go to the doctor saying I’m burnt out from work I’d suddenly have that golden pass to be a complete bitch. I’ve actually been watching it happen with my husband and all of the behavior people find absolutely inexcusable for me, suddenly becomes tolerated for him. You can’t see the burn out, there’s really no physical representation to it, but unlike other mental illnesses the moment you say you have burnout the sympathy oozes off everyone in a 5km radius. It’s one of the weirdest thing ever.
There is a huge double standard here and I really don’t know what to do about it. My husband and I got into a huge fight last night because he came home after a 2 week vacation in France and there were dishes in the sink from the previous night’s dinner and the day’s lunch and I just didn’t have the time nor energy to stand there and unload the dishwasher then put the dishes into it.
It seems so simple of a thing to just load and unload the dishwasher doesn’t it? There’s really no excuse for not taking care of it, except to load it a few nights ago? It took me 40 minutes of standing, walking over to the dishwasher, standing slightly bent and putting stuff in until I couldn’t stand anymore, kind of hobbling back to my chair and sitting for a few minutes. Wash, rinse and repeat. Sounds like a lot of fun doesn’t it?
There was some stuff I’d put aside that was going to go into the plastic and paper recycling that I just hadn’t gotten to yet. He flipped out over that. I really don’t have any excuse except for having to do everything myself for the past 2 weeks, plus put in over 50 hours last week into work, exhausted me and I literally didn’t think about it. I’ve been in so much pain that a lot of times my life seems to be a series of calculations on how much effort and pain I have to go through in order to get something that shouldn’t take this much work, done.
Then, there’s if I’m having a really good day and I seem to be able to walk for kilometers… do I go out for a walk on a warm autumn afternoon and go as far as I can go while the getting is good? Or do I vacuum the floor and couch, which requires me to be slightly bent and my body loves me to punish me for? Then, what about tomorrow? Do I chance going out for that walk since today is a good day and risk tomorrow being a bad day when I need to run unavoidable errands for a client? It really shouldn’t take this much calculating to live a normal life.
This isn’t even touching travelling or conferences. Next week, on the 8th of September, a there’s a conference I need to attend to represent one of my clients. It’s in Amsterdam, but I will probably end up drinking so I need to take the train. Since there’s a yearly foot race happening this weekend too, the train will be really busy so I’ll probably have to stand because I don’t look like someone who needs a seat. Then I need to walk from the train station to the conference hotel. There aren’t any benches or anything to sit on between the two places, so hopefully I can make it there without a whole lot of pain and if I do, hopefully nobody sees me. Then at the conference, there’s a lot of walking around networking and standing. I can’t be seen being the person that always needs to sit so I’ll just suffer because I really try not to use pot or drink while I’m actually conducting business (even this is totally acceptable in my industry).
I’m sure I’ll do a lot of business, but the week after I probably won’t be moving a whole lot. Gotta love this invisible condition.
Then the week of the 18th I need to fly to Barcelona for another client. I usually love traveling but since this invisible condition in my back has really acted up this year, flying is miserable. I don’t dare ask for help between gates. I tried that at the end of last year and was met with such hostility because I don’t look like I need help, that I won’t make that mistake again. I can tell you exactly how many benches there are between getting off the train at the airport to my gate at this point. I can also tell you it isn’t many and I hope I have a good day when I’m needing to go through the airport. Walking around Barcelona should also be a nice experience but on my last trip I didn’t really go far, not only because of the heat, but because I couldn’t walk very far. It was agony, but I couldn’t let my client know.
They say that mental illnesses have a stigma, well, so do invisible conditions. It sucks and I don’t have an answer except that it’s physically, mentally, and emotionally exhausting to have to keep up the pretense that everything is alright when it’s not. I shouldn’t have to always wear my big girl panties, but I guess that’s life. Someone’s got to…
PetraAnn
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