My Journey

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.