“At least it isn’t cancer!”

What follows below, is  a sort of… open letter, I guess I should call it. It is one that I will translate to Swedish and give to certain people who are in need of an attitude change. Perhaps I should also tell them that they need one… It is a bit long, but please, stay with me. And if you would like to add something, leave a comment! If you have  question, leave a comment.

I’m going to introduce myself in a minute. But first, I want to ask you a question. I would like you to answer it out loud. There are no wrong answers and there are no answers that will upset me. Just say the first thing, or things, that comes to mind.

Are you ready?

When you look at me, what do you see? It is a serious question, what do you see?

My name is Jeanette. I am 34 years of age, and I have sinustachycardia and POTS. POTS stand for Postural Orthostatic Tachycardia Syndrome. We’re gonna stick with POTS.
When I look at you, I can see what colour hair and eyes you have. I can see your taste in clothes. I can see many things, but those things doesn’t tell me anything about you. I don’t know if you’re happy or sad. I don’t know if you’re having problems at home. I don’t know if you’re allergic to anything. I don’t know if you took a painkiller an hour ago. I don’t know what you had for lunch or breakfast.
I know things that DESCRIBE you. But I don’t know YOU. I don’t know anything at all about you!

When I go to see a doctor, or anyone, I become what the other person see. I’m the blonde one with blue eyes and plain clothes. I’m the smiling, and laughing, and obviously happy, and positive one. This is the label I get. “Label” sounds a bit bad, and that is why I chose that word. I get a label and anything that I say or do that doesn’t fit in to that label, is treated with suspicion or apprehension. Misstrust. Am I really sick? Can someone who look as happy as I do be sick? No, surely it must all be in my head? If I were really sick, would I be able to be that happy? Would I really smile at all times? Would I bother to wear make up? Would I really be able to sit there, in front of someone, and look like one of the happiest people they’ve ever met? No! Impossible!
This is reality for me and others like me. People who are sick, but on the inside. It doesn’t show. Invisible illness. It can be mental illness, physical illness, or both. “Not showing” does not mean “not real”.

We get the “No! Impossible!” all the time. And it is more frustrating than you can imagine! But even wose are the comments we get from people that are here to help us, or from family and/or friends. What follows here, are things you should never say to someone with an invisible illness, or someone you don’t know well enough to know wether or not they have one. Or you know what, just don’t say it. At all. Now, don’t worry, I will give you examples to WHY these things are wrong to say. (Remember, the answers to “why” are all based on ME and MY health (or lack there of).)

– We all get tired, you’ll feel better in the fresh air!
– But you don’t look sick!
– Stop thinking about it and you will get better!
– You need more people around you, that way you’ll get distracted from how you feel!
– Getting well is easy, just stop eating gluten/dairy/sugar/salt/carbs/meat/other!
– If you really were sick, you wouldn’t be able to be so happy!
– You’re too young to be sick!
– You’re young, things will get better!
– You’re too young to know what it really means to be sick!
– At least it isn’t cancer!

I am on two kinds of medication. One to lower my pulse and one to help my body get through the day. I literally need medicin to be able to get out of bed in the morning. Just think about that for a minute.
Here is my second question for you; how long does it take you to get out of bed in the morning? Seconds? Minutes? On a good day, it takes me 1 hour and 10 minutes to get up. On a bad day? Maybe 4 or 5 hours.
Knowing this, that I need medicin to get me going, and it STILL takes me that long to get up, do you still think fresh air will make things better? Starting every morning with a fight to get up, do you really blame me for being tired? During an hour, my pulse can go from 50 to 200, down to 120, up to 210, down to 60, up again, and down… and up… Do you not think this will affect me?
How about knowing that on a good night, I only wake up 3 – 4 times, but on a bad night I can wake up twice/hour. I could make this list much longer, but I think it’s more than enough for you to understand that I do get tired and it’s nothing like being tired when you’re perfectly healthy. And sweet someone don’t you dare compare it to “oh I have kids, I know how you feel!” No. No you don’t! You can NOT compare having a kid or two, to having an illness. It just doesn’t work that way! Don’t be that person.

I don’t look sick… How should I look? To look sick, how would you want me to look? Sad? Crying? Bones at odd angles? Blood in the corner of my mouth? I’m not asking to mock anyone, I would very much like to know how I should look, to look sick. People everywhere say it “don’t look sick”, but what does it mean to “look sick”? Sad does not = sick. Crying does not = sick, and so on. Those are both feelings, not sickness.

If I stop thinking about my POTS, I will not get better. Actually, if I stop thinking about it, I will get worse. I need to think about it. Prepair. Think ahead. Plan, plan, and plan some more. That’s what I have to do to make sure I will feel as good as possible. If I don’t, if I just take everything as it comes, my body will crash, on all levels.

No, I really don’t need more people around me to feel better/forget how I am doing. There are times, quite a few times too, when the best thing for me is to be left alone to heal. To relax. To take it easy. To lower my stress levels. Having people around me at all times basically mean constant stress for my body. So no. No thank you.

Don’t eat this, don’t eat that, don’t do this, don’t do that. Believe me, I know my illness better than anyone, I know what to eat/drink and what not to. It’s as easy as that!

Sick people can be happy. I happen to be a happy and positive person. Not because I have an illness, but because it is my personality.

I have never understood why people say that someone is too young to be sick… How can someone be too young for it? What is it, that makes me too young?

I’m still young, I guess. That doesn’t mean it will get better. Some people tend not to understand “life long”. Those words can be added to pretty much any illness out there. Young does not mean that every illness will go away. Why would it?

How can I not know what sick “means” because of my age? I AM, in fact, sick. I have never understood what age has to do with health.

At least it isn’t cancer… No, I don’t have cancer, and I am happy about that. But not having cancer, doesn’t make me better. I am still ill. I still have POTS. It is still horrible. Does my illness not matter because there are people that have cancer? If you believe that, I kindly ask you to stop complaining when you get a cold, because at least you don’t have POTS (or cancer).

When responding to a person saying any of the above things, they usually answer with “oh, I didn’t know that”. Clearly they knew enough to say those things, no? No… Here is a lesson that can be used in every aspect of life – don’t talk about thing’s you know nothing about!

And please, feel free to complain about your cold, or your headache, or what ever it may be. You are free to feel bad even if the person next to you have an illness, any illness. Me having POTS doesn’t make a really nasty cold any easier on you.

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