March

24/03/2014

If there’s one thing I worry about the most with having Lupus, it’s potential hair loss, not that my immune system is “broken”, I worry about losing my hair…

It is completely and admittedly out of vanity that I worry about this. I love my hair, I have spent years growing it long again and it is now almost half way down my back, I simply love my hair.
When I do my research about my disease I see photos of all these beautiful women that are struggling with hair loss, in both large amounts and small amounts.

Being a blonde my hair shows up everywhere, if there’s one thing that my flat mates have ever complained to me about, it is my hair and the constant notice of it on the dark carpets. I shed like a dog! Each time I notice hair all over, I panic “oh no, it’s happening!” and we all know it isn’t, I’m just worrying. That is the one issue with researching a disease, you see the bad more than you see the good.
Don’t get me wrong, you need to understand the bad, but you also need to see the good or else there’s no point really, is there? It’s only going to make you worry, and you’re only going to get down about it.

I struggle to see the good in having Lupus, I’ve said the phrase “Lupus is ruining my life” through tears over the phone to friends too many times. Why do I feel like it is ruining my life? Because I LET it! I’m have a negative attitude towards the disease, yes, it’s awful, yes it causes restrictions on my daily life, but there’s always a way to do things, and always an alternative to just giving up and I need to remind myself of this.
If I didn’t have Lupus, I wouldn’t know about this disease. I hasn’t hears about Lupus until my diagnosis, this gives me the opportunity to help to raise awareness of this disease to hopefully make diagnosis easier for those newly diagnosed as they learn the ins and outs of my life and I can hopefully influence them positively.
If it weren’t for getting Lupus, I wouldn’t have something personal to me that I want to help make a change to. (See petition: http://epetitions.direct.gov.uk/petitions/62674)
I wouldn’t understand the disease, I couldn’t sympathise with other sufferers on the same level of understanding that I do now.
I feel that it makes me mentally stronger, this blog gives me purpose, I know it will do good. If I can overcome the bad days of Lupus, mentally, not just physically, I can do a lot more.
It makes me appreciate the good days that I have, when I don’t have a flare up I simply appreciate life more than ever. I visit the gym, I go swimming, I go shopping, I do things that I don’t feel like I can do with ease, or at all, with a flare up.

—————————————-

19/03/14

“But you don’t look sick”

Contrary to popular belief, you don’t have to look sick to be sick.
Unfortunately some people are ignorant enough to completely disregard your illness because they can’t see it and they aren’t living it.
I say ignorant, maybe I should use the term “uneducated in this illness”?
I understand very well that this common belief that if your illness can’t be seen, you are clearly perfect. So… good on you for having a rather marvellous immune system and please, have my congratulations.

Unfortunately this ignorance spreads further than someone not being able to see your immune system, I know many people with many different illnesses that cannot be seen, and still certain members of society completely disregard them, or even call the sufferers liars despite the tragic amount of medical evidence about the condition against the finger pointer of the “Liar, liar pants on fire” party.

Such illnesses or conditions follow:

  • Lupus.
  • Mental illness.
  • Learning disabilities.
  • Vocal issues.
  • Arthritis.

These are simply examples, I could go on, but then we would be here for a long time.

Don’t be that person that penalises someone, or belittles them because you don’t understand their illness. Listen to them if they wish to talk about it. Research the illness.
Please don’t be the person that undermines somebody because you don’t want to understand their position. There’s too much ignorance in this world as it is.

I have been on the receiving end of what is certainly only classified as discrimination. What I did wasn’t good enough, despite being very poorly at the time, and these people knowing about it. I won’t go into too much detail however, what’s done is done, I can move on and forgive and live in hope that my blog can make a difference and hopefully stamp out some ignorance.
What I will say is that I was left incredibly upset, hurt, and angry at this whole ordeal and couldn’t understand why something that I cannot help was grounds to belittle me on. It isn’t clever, nor funny, actually it makes you look a little bit silly!
I was called out as “lazy” for a physically debilitating disease, which loosely translates to “I don’t understand your illness”, I have almost forgiven, but not forgotten.
(Please, excuse me while I choose to do nothing all day because I feel like I can’t move due to the severe pain that my forever swelling joints are causing me with little relief from the medication designed to help me)

This whole post reminds me of a Meme I saw on the internet earlier:
“Oh, my bad. I didn’t realise that you are an expert on how my disease doesn’t exist and I’m not actually in any pain. Please continue to enlighten me as to what’s going on in my own body, since I clearly have no idea. I absolutely love douchebags with medical opinions that completely marginalise my experience.”

I can sympathise with a number of people about a number of illnesses and the massive difficulty that you may have trying to explain to friends, family, colleagues and surrounding fellow humans exactly what your condition is like.
If you don’t know what it’s like to find it hard to explain an illness to someone, think about that time you tried to tell that girl/boy in high school that you fancied them. (Trying to find the words for that was never easy!)
In all honesty I’ve got a bit upset on a number of occasions because my friends can’t understand how painful Lupus can be, I don’t expect them to understand, and don’t get me wrong they sympathise and are the best fiends a girl could ask for, but they’re not me, so they don’t see it from my perspective and admittedly I don’t see it from their perspective a lot of the time either. I, rather a lot of the time, look at Lupus as a negative rather than a positive.

First positive thing about Lupus – I learnt about a new condition I did not previously know about.

Second positive thing about having Lupus – I get to blog about the condition to raise awareness about it and potentially help others.

I’m not saying I’m perfect and nor am I saying that I’ve never done any of the above before.
What I am trying to say is that I think everyone needs to think about how other people feel and how other people live through what we cannot see. We should consider learning about the things that we do not understand as a means of helping others, rather than doing what is typical of us and dismissing or even disregarding things that we don’t understand therefore creating the issue of hinder rather than help.

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