I’d like to begin by saying that not being able to work due to illness is no walk in the park. I worked and studied fulltime prior to getting ill, you know. I was never one to take sick days unless I had something horribly contagious.
I would much rather be able to come home and say “I am so tired from working today”, rather than wake up and go to sleep with the thoughts, “I’m tired of being sick, poor and absolutely useless”.
I don’t appreciate the rolling of eyes when I tell you I am receiving a government payment. Do you think that I enjoyed grovelling at the feet of the Government, to earn in a fortnight, half of what I earnt during my past fulltime job?
And believe me when I say that they didn’t just hand over the measly income to me. I had to fight for it. I had to print off every test result I’ve had over the past eight months, and get professional letters written from every Specialist I am currently seeing. And, these letters didn’t say “Cass is quite ill and unable to work. Please give her money”. They were detailed, some more than three pages, explaining every symptom I have and how it effects my ability to be mobile.
And where does this money go? You won’t see me spending it on a new wardrobe, or eating lavish meals. I pay for medication, appointments and tests.
I find the question, “What do you do all day?” incredibly offensive.
I look after myself because I am in pain majority of the day.
Yes, I sleep, because I am exhausted from feeling nauseous and aches throughout my body.
Please don’t think that I have a beauty sleep of ten straight hours. I usually go to sleep and wake up every two hours from a nausea spell or stomach cramping.
I am also in and out of appointments and tests. I am constantly trying new medications, struggling to eat. Eating for you is normal, natural. What if you simply… couldn’t anymore? What if your stomach refused to digest any food you put into it, and punished you with constant nausea and a weak body?
Whilst you’re worrying about what dress to wear for tonight, or where you are going to on a date,
I am stressing over the menu being appropriate for my stomach, and trying not to vomit in front of anyone.
I wish I could walk, drive and catch transport independently, but I can’t at the moment so please don’t look at me up and down when you see me linking arms with my father, my mother or my friends.
If your world was constantly spinning, you’d want something to hold onto too.
The most hurtful thing about being ill, is the loneliness.
I appreciate you saying, “If you feel better, come out with us tonight”, but I’m flat out going to say no, because firstly) my illness is chronic and doesn’t result in me feeling “better” because I cannot get “better”. Secondly) I might not feel comfortable being in a social environment with my symptoms.
What happened to home visits and chats over coffee or tea? Too boring, I guess.
I also don’t appreciate it when you tell me to do things.
For example, “Get up and go to work, you’ll feel better”
“If you don’t think about the pain, it goes away”
“Just come out for an hour”
It’s not as easy as just doing these things.
I have to take into consideration my pain, my other looming symptoms, and obviously my medication and strength.
An hour for you is simple, an hour for me feels more like five hours.
I know that you are busy with work, study and your new partner. You probably cannot imagine what it is like to have something like this swoop into your life and steal your health and independence from you. You probably think that you don’t have time to fit anything else into your schedule.
So, try and understand where I am coming from when I say that it would mean the world to me to hear from you once in a while, and not once for my birthday with a cheap “hope you feel good” at the end of your post.
Call me for five minutes.
Send me a Facebook/text message that shows a real interest in how I am feeling, instead of a “hey”.
Come over for half an hour.
I cannot tell you how much it would mean to me.
Whilst you are achieving your dreams and falling in love, travelling the world and having you-time, I am stuck here with this illness and it is depressing.
It is really depressing, and incredibly lonely.
I am not asking for money, a meal, a gift.
I mostly just want someone to talk to sometimes. Anything else is a bonus.
I’d like to think that if anything happened to you, something of this magnitude, I would do whatever I could to brighten your day, no matter how busy I was. Now that I know what this feels like, I am incredibly understanding.
Maybe that’s what it takes.
Maybe you won’t ever understand.
But, I wish you would try to. A little bit of consideration goes a long way.
Finishing off for the night, please don’t take your health for granted.
Don’t abuse it, because you could wake up one day like me, with an upside down world and no control over it.
You don’t know how lucky you are.