Dear Healthy People,

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.

From, Me.

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13 comments

  1. So glad your fight with the government finally is over and they got the heads out of the ass’s and are giving you what you deserve…Sweetheart I don’t think anyone in their right mind would eye roll and think you don’t deserve this, and if they are shame on them….fools……..your doing what you have to get through this…I think of you often, send you love and hugs……

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  2. Oh, Cass, you are spot on with this post. I also have thought, felt and struggled with everything you mentioned. I feel your pain, I know your tears. Please know that none of this means you are weak or unworthy or worthless. You are sick and it is not of your own making.
    You mentioned that you are more understanding from having lived this life. Yes, I found that too… I am kinder, more generous, more tolerant. I am grateful for that. It’s good to be a better person on some level in the midst of our struggles.
    I have often thought my disease is a punishment from God or the cosmos or whomever/whatever one may believe is in charge but when I ask the powers that be for guidance, what comes to mind is that part of my struggle is meant to teach me grace and tolerance that I may not have been capable of achieving otherwise. We may be sick, sad and incapable of many things right now but we are growing and learning none the less. We are learning powerful lessons that many folks simply will never learn and some of these lessons are blessed.
    I think of you often, Cass and I fight with you and for you!!

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  3. It’s hard to lose friends to illness, but it’s important to remember that some people simply can’t handle hearing or watching people hurt. It’s a hard concept to understand but it was me before I got sick. It was very hard for me. I didn’t know what to do or say. I would mumble and sweat and totally avoid the situation 100%. I love when my friends come visit me and make time for me but totally understand when they don’t. Some people just can’t handle it.

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  4. Great post! You should never take your health for granted, I 100% agree with that. You never know what’s gonna happen, one day you’re healthy, and tomorrow you’re ill. You’re such a strong person for dealing with all that, I’m sending you virtual hugs right now ❤

    Liked by 1 person

  5. ((Big Hug)) While I don’t have the same thing you do. I have a chronic invisible illness and everything you said fits for me as well. The best we can do is try to keep ourselves positive even though it’s a struggle a lot of the time. If it wasn’t for my pets I think I would lose my mind.

    Liked by 1 person

  6. My thoughts are with you. I’m home not working, and get annoyed with the questions about what I do to keep busy during the day- people don’t understand that managing an illness can keep you plenty busy. And, it would be great if more people understood that making plans is difficult and it would be much better if they stopped by for a visit- but a lot of them don’t understand, and then it can be harder to stay in touch with people.

    Liked by 1 person

  7. I know that I don’t share in your physical experiences but I do know the feeling of people neglecting you, not making time for you, not supporting you, and how that just feeds the monster that is depression. Sometimes, it feels like a never-ending battle…</3 I'm so touched reading this because it resonates with me so much…it's comforting (although sad) that I'm not the only lonely person in this world and that WordPress has brought all of us together. Please message me whenever you want to vent or be listened to. And you know I'll be checking up on you too! Love you girlie ❤ P.S. I wish I could come have tea with you! 🙂

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  8. As I was reading this I could feel the emotion pouring out of the words. Honestly nothing I can say will change anything but I am hoping that you will find peace. If I could (as sandycademy said) I would come have tea with you! We could discuss life, writing, and the usual stuff, y’know?

    Keep pushing on my friend.

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  9. Most people are most interested in themselves….sad but true. I started listening to news radio/talk radio so I’d have interesting things to share outside of myself…some way to engage. Hugs.

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  10. Thank you for this thorough and thoughtful piece. Dealing with other peoples’ comments about my CFS/ME is, I find, almost as difficult as dealing with the chronic weakness, as I often have the sense that they are thinking, “it’s really just all in your head!” Not easy, and I hope you, and I, and all of us who are coping with chronic whatever, will find strength and pockets of joy day by day by day.

    Liked by 1 person

  11. Unfortunately, I completely understand where you are coming from. Most people haven’t the slightest clue how isolating having a lifelong chronic illness can be! Two of my friends are now experiencing what I have been going through for years first hand. Their own fibromyalgia cases have started to disrupt their chosen careers. Did not want this to happen for them.

    Personally, I have multiple sclerosis. Have been in and out of wheelchairs since 1996. In 2014 my neurologist told me I was no longer allowed to drive. (Hadn’t been driving since we moved into the state of MN back in 2008, so wasn’t that big of a deal. Just hurt to give up on the dream that maybe some day I would drive again. Since I started driving when I was 12 years old on our farm’s property, and then traveled public roads at the age of 14, think I had plenty of driving under my belt over the years!) Have been in a wheelchair permanently since 2010.

    Healthy people just don’t understand we do not enjoy being constantly sick!

    Liked by 1 person

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