You are NOT your illness.

“So, tell me about yourself…” is how one Specialist began our first appointment. He went on to tell me that he had to really get to know me, in order to understand how to treat me, and what my body could or couldn’t handle.

My response was, “I’m sick. There’s nothing interesting about me”
To which he said, “But who are you without the illness?”

I realised at this moment that I had allowed my Invisible Illness, to define me.
Please remember this introduction, as I quickly move forth a little.

I had a bad night with my symptoms, which seemed to have carried over to today. The more I focus on it, the sooner I notice that the chain reaction has begun inside of me.
Firstly the symptoms, which leads to the sadness, followed by the tears, an anxiety attack, and finished off with heightened symptoms.
I decided to research, which turned out to be a mistake (as well as a blessing for this topic post) and came across a post in which I was not impressed by. It had somehow received over ten thousand views/likes/hits, (the name I will not mention) and I am at a loss trying to figure out how/why. It did made SOME valuable points, but overall, the article pretty much stated that sufferers of Chronic/Invisible Illness need to ‘toughen up’.
We have to force ourselves back to work, to preoccupy ourselves.
We have to stop whinging.
We have to get out of bed and force ourselves to fight, or else we aren’t fighting back.
We must stop spending our time on appointments and in Doctor’s surgeries, and focus on management techniques.

You like tough love? Then this post is much suited for you.
But I, a sufferer of an Invisible Illness attacking my body, do not agree.
I have some days where my symptoms are controllable enough for me to see my friends, go to the grocery store or allow me to live normally. I still need assistance, but I do have good days.
But, I also have days where my body is so exhausted that I have to rest, stay indoors and rely on people for assistance.
It isn’t my choice.
It is the way things ARE.
Do not always believe what you read on the internet, or feel disheartened if you come across something as harsh as that.
YOU know YOUR body better than anyone, so don’t let others tell you otherwise.
The outsiders see black and white, but we are exposed to an array of colours.

I decided to write my own coping mechanisms whilst dealing with this nightmare.
Stop questioning/asking why
Let me check WebMD for a diagnosis.
Maybe I have lymphoma? Bacterial Overgrowth? An autoimmune disease?
I am being punished for being a bad person.
This is karma for taking things for granted.
Is it because you had two cheat days last week?
I am sick because of that messy night out I had a few years ago.
I am just overall unlucky.

If this sounds like you, then you must STOP.
I know how easily it is to fall into this frame of mind. I still do it when my days are overwhelming.
But, you are making things worse for yourself, not better!

Stop hating yourself
Make peace with your body, and mind.
This is NOT your fault, and instead of feeding your mind more negative energy, you could be surrounding it with positive.
Go to a mirror, and instead of pointing out the things that you HATE about yourself, (ie. The loss of weight, the acne, the nausea, the paleness, the hairloss) point out the things that you LIKE about yourself.
At the end of every day, write down something you are THANKFUL for, even if it is seeing that little bird perch itself on your window sill whilst you were stuck in bed all day.

Understand your symptoms
Confront/Organise/Control
You need to be able to live with the least amount of suffering as possible.
Admit you have an illness that can’t be diagnosed, and don’t be ashamed of that.
Observe your body and take note of what helps ease your symptoms or what worsens them.
Organise appointments, write a symptom or a food diary, a Medical Timeline, have a calendar ready.
Have Control. Only ask your body to do what it can tolerate.
Work WITH, not AGAINST.
And please don’t say, “I can’t”, because you CAN.
You may not realise it, but you do it every single day.
You are living proof of this!

Pinpoint your stressors
Stressors usually include:
– the Chronic Illness itself
– Symptoms
– Uncertainty of the future
– Financial Difficulties
– Immobility
– Insomnia
– Negative influences
– Feeling of loneliness/inability to open up to anyone
I know we can’t control/rid ourselves of some of these stressors entirely, but we can learn about them and learn how to manage them.

Have goals
Continuing from the topic above, your goals should be small… take baby steps.
For example, “Today I will…”
– eat three small meals.
– get out of bed.
– make a Medical Timeline.
– write a blog.
– work from home.
– try alternative medicine.
– research/apply for financial aid.
– change my diet.
– stop drinking.
– not inflict self harm upon myself.

Seek support
Speak with your Doctor, a Counsellor, a chat site, or call a helpline.
Read a self-help novel. Reach out to family or friends.
And best of all, WordPress has one fantastic Support Group of people who are also suffering, and who WANT to speak to you! Reach out to our little community!

Which brings me to my last, and first, point:

Don’t let your illness define you.

Who are you WITHOUT the illness?
Are you a writer? A mother? A husband? A reader? A baker? An Accountant?
What are your talents?
What are your interests?
What is your favourite meal/movie/colour?
What brings you happiness?

Now, list five positive traits about yourself – yes, right now.
Here, I’ll start it off: I am Confident, Creative, Honest, Leaderly, and Lovable.

And remember, you are not alone.

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58 comments

  1. There’s good insight and advice here, which I think is the right balance when we’re talking about stuff like this. It’s not one or the other, we’re sick yes, and we need space to say that openly and talk about what happens and our struggles, but also, we’re not victims, we’re still capable, we still have the same goals, dreams etc., which is why the second half of this post is important.

    I do a lot of the things you talk about in regards to coping mechanisms. Working with, not against it and myself is a kinda mantra I have.

    Anyway, keep writing, I’m enjoying your posts. 🙂

    Liked by 1 person

      1. Oh thank you honey – as I do with yours. There is so much good work to be read in so little time hah. I’m always coming across fantastic blogs these days. I’m also lucky to have loyal followers xx

        Like

      2. your welcome 🙂 and you’re right, sometimes I spend hours in my reader or browsing new content. Its most rewarding tho when I find the hidden gems, like you and others I follow. I don’t follow unless I actually commit to fully reading posts.

        Like

  2. Congrats on reaching the 200 followers mark! I just reached 20 myself and felt super excited that after months of solitude others are finally reading and liking what I have to say.

    Great tips on coping with illness that is chronic and often times hard to define/explain to others. My favorite tip was goal setting. I just mentioned the importance of that in my life and how I achieve things while living with bipolar disorder.

    Keep up the great writing and inspiring.

    Thanks for reminding so many others that we are not alone.

    Liked by 1 person

      1. Thanks! I’ll keep that in mind. That’s for reading and following my stuff too. It really feels great to connect with others who are living with the same condition and similar symptoms/experiences. While the circumstances are unfortunate, it really does help that I don’t feel as alone anymore.

        Like

  3. You are so smart. That might sound like a silly or simple comment. When I say that, I mean you are wise. You have emotional wisdom that some people don’t possess even in old age. Your unbelievable compassion makes your reader feel like even while you’re dealing with what you are, you are extending a hand and a reassuring smile to them as well. There are not enough people like you in this world, and I’m thankful you have a lot of followers so that you can continue to be heard – your words are valuable and inspiring.

    Like

  4. Your comment has really, really touched me. Thank you so much. I just want people to know that they’re not alone in this. I didn’t have anyone to talk to about it until I was opened up to this world. Thank you for reading xx

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  5. Thanks for liking my post. I love your blog. I can relate so much. I started my blog to help me deal with the same issues. I am excited to see more of your work.

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  6. Thanks for liking my blog post. I love your blog. I can relate so much. I started my blog for the same reasons. It’s good to see others putting it all out there and beating the stigmas. Can’t wait to hear more!

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    1. I quite enjoyed your posts. In particular, that quote you came across – If you are going through hell, keep going. And your post about Love. You write so beautifully! That post really hit me, because it’s destroying me too.

      You have found a loyal follower in me. I hope you enjoy reading X

      Liked by 2 people

  7. This is so beautifully written and exactly what I needed to hear tonight! There are days when I feel so bad that I can’t remember anything about myself except how horrible I’m feeling at that moment. It feels like I’ve lost my identity in a way and have let the illness take over. The next time I have a day like that, I’m going to re-read this post and remind myself that I am more than just my illness!

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  8. I like your wisdom in this post. I feel like I am two people – my work persona, which continues on despite my chronic and sometimes desperate depression, where I swear most people I come into contact with would have literally no idea, and my depressed self, that does nothing at home, that needs to rest a lot, that “fixates” on my illness, that has been told to “look on the bright side,” etc. I definitely am working on being more gracious and empathic to that second self. She needs a break, and I don’t give it to her often enough. I appreciate your insights.

    Liked by 1 person

  9. Great list! Thanks for liking one of my posts so I could find your blog! It’s so nice to remember there are other people in the world going though this. I also do the thing where I make myself write down something good from each day, no matter how small, and it’s been helpful for retraining my brain a bit. I started these “Happy Journals” for both my kids when they were born so they’ll have a record of something good from every day of their lives. It’s nice to feel like there is SOMETHING we can do to make ourselves feel better!

    Liked by 1 person

    1. Oh that is the loveliest thing I have heard! Your children will appreciate it in the future, I assure you. I wish more parents did little things like that.

      And, thank you for reading. I am just trying to connect with people who… well understand. And if then they can connect with each other, it will be a blessing!

      Like

  10. Thanks for shareing this , as am knowing first hand, these words mean a lot and are very powerfull, keep blogging and will drop in and read more,, take care and be safe , x

    Liked by 1 person

  11. Your a Smart Gal Cass*
    Thanks for this, and the others. I know, you don’t feel you need to be thanked, humility, a great quality.

    Just having a bad night again, strange, because I ran and felt great a few hours ago. Deja Vu. Anyways, thought I’d read some of your posts, they usually help some.

    “Loneliness and heartache are a dangerous mix”

    Liked by 1 person

      1. I wont thank you, if you dont say your sorry, deal? I dont want you to be sorry, its not anything youve done or anyone else.

        I have a tendacy of saying to much and ruining things, be it a helpful friend or loving relative, just part of my illness I suppose. Tonight sucks, think ill take some melatonin for sleep and do something great tomorrow.

        Thinking about that Aussie rain!!

        No rain here, in a 4 year drought. :/

        Liked by 1 person

      2. Deal!
        Oh the rain here is a lot. I actually love rain but this is too much. I am not a fan of the heat. I too will be taking some meds later for sleep. Just had my osteo appointment and my symptoms have flared.

        Liked by 1 person

      3. Haha I almost typed what I asked you not to type, the S word. But, that’s to bad about the flare up.

        Get your rest, as for the rain, we can trade places for a year, I can handle the rain. For the heat, I can point you to a few places in Cali where it stays moderatly cool throughout the year.

        Like

      4. German mostly, Irish and a few more.

        You’ll be better, and have great travels, not having to worry about money or anything. Just keep focused, I know, I know how that is for our minds but were the majority now, I feel.

        Had some other thoughts I wrote, but don’t want to lead into the illness.

        Sweet dreams, Cass*

        Liked by 1 person

  12. Reblogged this on Porcelain Fibromommy and commented:
    I came across this beautiful post while just checking out who had “liked” one of my posts. It nearly made me cry. I am not a beautiful writer like she is, but on my good days, I totally do as this post suggests. However, I’ve been in a tailspin of depression so, today, today I needed to read this. Maybe you do too.

    Like

  13. This is exactly what I needed to hear today! I’ve been feeling very down and draggy–in addition to a nasty fibromyalgia flare I have a broken foot that required surgery and is quite painful–and your words have helped me feel so supported! Thank you so much! I hope you don’t mind if I reblog this–I really think it should be shared.

    Liked by 1 person

    1. I am so sorry to hear of your pain and illness! Fibro is so tricky to deal with. You have a broken foot too?! You define strong, my dear! I hope you know that this is just a rough patch and you WILL come out of it stronger.

      Thank you. I don’t mind the reblog. I appreciate your kind words and hope you feel better soon xx

      Liked by 1 person

  14. Hi! I’m so happy to come across your blog. I wanted to ask you if you have any work advice for people with chronic illnesses – having the option to work from home, flexibility of hours, decent pay, things like that? Really relating to everything you write, thank you 🙂

    Like

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