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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'It's like swimming upstream every moment that you're awake.'


Trees in water

I know I've done this before, but this time it isn't for loved ones, this is the message we want to convey to strangers, to friends, acquaintances:

1) We are doing the best we can.

Yes, sometimes that best to you isn't enough, and we wish we could do more.

2) We hate cancelling plans, calling in sick and letting you down.

We don't know what each day brings, for all we know the next day could bring new aches, new pains that stop us from even doing the necessities that we want. We never want to disappoint by calling in sick to work, or cancelling something that has been planned for months. But you need to understand, having a Chronic illness makes us unpredictable.

3) We hate complaining and whining. We are sick of being sick.

I get asked a lot why I don’t do certain things, why I wear what I wear, the answers will always be the same and I’m sick of having to explain myself. I am wearing a coat in summer because I am cold ... ‘Well, why are you cold, it’s hot out ..?’ Questions seem to never get old. It’s even got to the point that if I answer a question not mentioning my illness’s, I’m pictured as lazy. Or it could be even simpler, my parents asking me to do something like peel the potatoes, I started off peeling them then got a terrible lightning bolt feeling in my wrist so had to stop, so do I tell them I felt like this or not ..? If I do ..? They’ll say that’s just another thing to add to the list, and if I don’t ..? They’ll never know I feel this way and if bought up in a convo they’ll say ‘well you never told me this’.

4) We don't want your sympathy or pity.

We don’t want you to feel bad for us, it’ll just make us feel worse. We don’t want you to have to change your schedule around us as that will also make us feel bad.

5) We just want your understanding.

This, this might be too much to ask. As how will you understand what we are going through. I tell people it’s like a constant struggle between fire and ice, they’re like ohhh I get it, you’re just hot and cold. No, just no. My bodies thermostat does not exist, it cannot choose between being cold or being warm, so much so that it constantly flickers between the two. I just want you to understand that it’s not easy, I know you won’t ever understand how I feel, just as I won’t know how someone feels who’s different from me. I just want you to understand that life isn’t the easiest for us, nor is it to anyone for that matter, but just have some understanding that what you do on a daily basis and view as normal, can be one hell of a task for us.

6) Don't tell us to get better, don't you think that we would if we could.

Man, I hear this a lot. ‘Don’t pain meds help ..?’ ‘Just wear extra layers if you’re cold.’ ‘If you’re hot then take of your coat’. Time and time again will I be saying ‘only if it was that easy’. I also hear ‘it must be in your head, because you look fine.’ It must be mustn’t it, all in my head, I so love being in pain and choosing not to go out on a cold day to be with family.

‘You’ll get better’, - something someone says when they’re either not interested or have no idea what any of the illnesses I’ve mentioned mean.

7) We have tried getting over it and forgetting about it.

Trust me we have tried. Making ourselves busy just to try and ease off some attention on the pain. Even sleeping, sleeping when you know you don’t need sleep just to try and ‘sleep off the pain’. Unfortunately, it never works. Our illness will always remind us that it is there, that it can easily increase the pain levels just so that we know it hasn’t gone away.

8) We have tried different exercises, different diets, different medications and different therapies.

Three medicines I’ve tried ... and only one has worked, and that’s just to stop the itching. But even then, is the medicine safe ..? What side effects will I get ..? What is it doing to my body overall ..? Exercise ..? Do I want to have a constant EM flare ..? Nope. I don’t even have to be doing anything and I’ll still flare, talk about ironic.

As far as diets are aware, I’ve not altered mine but have read that many have, it may help a tad, but overall not much difference is seen.

9) All we want from you is friendship and support.

Just being there for us means so much, little things aswell, like turning on the heating when cold, reminding us that we need to wear slippers, or turning down the heating when they can see us getting red. Knowing that you are there for us when we need you and know what brings us pain means so much more then only being there and not showing support.

10) We want distraction, that just a part of our life isn't associated with pain and illness.

This, this is why I cook, I paint, take care of my pets as it’s so therapeutic. It brings me to this ‘happy place’ that makes me forget about pain for even just a moment, it brings me joy that’s indescribable. No it doesn’t last long, I’ll have an EM flare while cooking, a raynauds flare when painting and even both when taking care of pets, but sometimes it just doesn’t matter as what you’re doing takes over. And we so wish that, that moment would last longer then 5 minutes.

11) No matter how well you think you understand chronic pain or illness, until you have it, you won't have a clue.

Even I had this trouble before I was diagnosed, if someone told me they had an illness and described it to me, I’d still have a hard time understanding fully how they feel, how they trudge through the day doing even the most simplest of tasks and thinking that a chore. Finally now I know, I don’t wish what I have, or any chronic illness on anybody and I don’t want them to fully know how a chronic illness feels as it’s awful, and I thought before all of this having a runny nose was bad. Boy was I wrong.

12) Just remember that its not our fault.

We didn’t choose to be this way. I believe I was given this by God, to test my strength and faith. Yes it’s definitely tested both, but I’m still standing strong just as my faith is stronger then ever. God has a plan for us all, and if this is my plan then so be it, but I’m not going to be pulled down by my illnesses, I’ll use them to spread awareness and empower those who are going through the same and similar.

Until next Monday,

Bethany S.

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