So, you’re Chronically Ill. Now, what?

Hello.
If you are a newly diagnosed sufferer and/or blogger, you are in luck; you have come to the right place.
I want to extend a helping hand to you; think of me as a shadow.
Why would a stranger actually want to listen to you?
Because this stranger knows exactly how you feel, and she wishes that she had someone to talk to when she first began her journey through illness.
Let me guess – you feel a range of emotions all at once?
You are afraid, confused, and incredibly frail.
You’ve been suffering for long enough, yet you still don’t have a total grasp on each symptom, and when you think that you do, you are struck down with multiple new symptoms.

You’ve seen a number of Doctors and Specialists and had every test under the sun.
Maybe you are diagnosed, maybe undiagnosed.

Do yourself a favour.
Take a deep breath in, and release.
No, really. Do it.
Close your eyes and take a deep breath in,
hold it for five seconds,
and release very slowly.
Do this as many times as you can before you read on, as what I am about to share with you might be hard to sink in.

I want this to provide you with reassurance; that you are not alone, but I would also like to share my wisdom with you from my own journey. When I first fell ill, I had nobody to turn to. I suffered for months in silence, as nobody entirely understood what was happening to my body, or believed me. I look back and wish that I had someone who said, I believe you. I wish I had someone to talk to about all of this medical stuff and the big life change.

When I say that you have come to the right place, I really mean it.
As you sit behind your screen, you are actually surrounded by many other sufferers sitting behind their screen, experiencing the same things; we all want to be heard, helped and listened to.
You will make lifelong friends on here, and they will be incredibly significant in your journey.

First thing is first; you are sick. It’s a bit of a shell-shock, isn’t it?
You will hear the term “Chronic Illness” floating around. This means that your condition has gone over the three month mark, and doesn’t have a date of finish. You might also hear the term “invisible illness”. This means the illnesses that cannot be “seen” or cannot be “diagnosed”. For example, you can very much see the flu and its symptoms. You cannot see vertigo or pain.

Secondly, you will need a folder. If you don’t have enough money to purchase one, do not stress. Just keep everything “together”, nice and neatly. You will hear me rant about this wondrous folder through-out my blogs, amongst other things.
You most likely won’t have to print anything; your Doctors will be doing the hard work for you. Now, you need to ask your Doctors for every test you have – results that were positive AND negative. Bloodtests (the general ones) are the most important, as some Doctors tend to miss the smallest things in this lot of testing. If you have copies of everything, and they are recent, it saves you from being poked and prodded in the future by new Doctors.
Doctors MUST give you copies of your file, if you ask for them, so please do not sit there and take No for an answer!
In this folder, try and keep note of all of your symptoms, medication trials and food intakes (if you have digestive or stomach issues). Eventually, you will come across a Specialist who needs this information. You are better off having a few weeks of data instead of nothing.

I am making an assumption that most people have an Iphone or touchscreen phone with downloadable apps? Learn to navigate your way through Calendars, Reminders and Notes.
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As seen in the image, my phone holds all of my important reminders. I plan in advance, so I am well prepared for each visit.
Please remember to back up your phone, in case the unthinkable happens.
If you do not have a phone, then invest in an oldschool diary. No need for backing up, there!

I suggest that you find the time to make a call to the office of your Government and see if you are eligible for a sickness allowance or illness benefit. Some of us are able to work, others cannot. The benefits vary worldwide, but every cent helps and there is no harm in asking. If you are not eligible, then do not feel ashamed to ask your Doctors if they are able to ‘bulk bill’ or provide a rate of concession to your fees. Some tests cannot be Bulk Billed, but like I said earlier, there is NO harm in asking!

I suggest that you book yourself in to see a Psychologist.
A Doctor can provide you with a list, or you can do some research of your own.
I can see you rolling your eyes at me; the good ol’ “I don’t need to see one of them” faces.

Yes, yes you do.

You are experiencing, or about to experience, something traumatic.
You should not go through it alone.
You might have a great support group within your friends and family, or maybe you are without. Regardless, I believe it to be a crucial part in your journey. You might feel “on top of everything”, as I did for months, but there will come a day when everything becomes overwhelming. You will evidently feel saddened, anxious. Life will become much harder, so help yourself through it.
I did not see a Psychologist until ten months into my illness – after I had endured countless hospital visits and appointments, testing, ridicule from Specialists, loss of friendships, and changes to my body. I was emotionally, mentally and physically burnt.

I regret not seeing one sooner. Think of them as your Open Diary. Tell them everything you are feeling; good, or bad. When they ask you how you feel, be honest.
You can see them as often as you like. I see mine once a month.
If you do not feel comfortable around the one you find, see new ones until you DO find that one who you click with.
I promise it makes the experience a little less lonely, and you will thank yourself for it in the future.

Be prepared to try everything.
If you want, one day, to be healthy again, you will take the medication prescribed and you will try alternative therapies, but of course there are limits. Do not push your body to do things it is unable to do. Take new medications and supplements ONE at a time so you know which one you don’t react well to, and please, do not end up in the backyard of a sister’s, cousin’s, uncle’s, best friend who claims to be a Qualified Practitioner.
Choose your Doctors and Specialists wisely, but be open-minded.
Sometimes what helps us, are the things that we least expect.

You are going to have to grow thicker skin and become your own best friend; as blunt as it sounds, you might not feel the support you used to feel prior to being sick.
You will learn to read test results like a novel, and you will learn to trust your instinct.
You will receive a lot of backlash and uncertainty from those around you; this unfortunately includes Doctors, Specialists, friends and family.
Don’t let this make you lose faith in humanity.
You can sit in front of a Doctor and explain how sick you are, even though your tests are coming back as negative, and they will not flinch. Their first response will be “but, you don’t look sick”, or “the tests do not show anything, therefore there is nothing I can do”.
You must keep pushing for answers.
You must find the right Doctor, even if that means seeing twenty before one listens to you. Do not let any of them belittle you or shut you down.
Remember that it is a Doctor’s JOB to help SICK people, and you my dear, are sick. You deserve as much time as the girl who just walked in with the flu, because at the end of the day, we all want the same thing; to be healthy.

I want you to keep telling yourself that nobody will truly understand how you feel unless they experience it themselves. Try and not take things that are said, to heart. I know it is hard. I have turned away in tears multiple times, but I told myself that it was because nobody really understood what I was experiencing. I cannot hold anger inside of me for those who pass judgement on me. I don’t have enough spoons to put towards holding anger for someone (hehe).

I learnt quickly to change my perspective of things, and people’s actions. If they want to be educated in your illness, they will ask questions. If they don’t care, their response will be the opposite. All you can do is take care of, and stand up for, YOURSELF.

Connect with others in your community or online through your blog. There are thousands of sufferers who are probably your age, living in your city, and have chosen to write a blog for the same reasons that you have. Most of us are unemployed, stuck at home, and feeling the storm of loneliness.
Be prepared, and open, to making Penpals all around the world. My very best friends are actually international, and I met through my blog. The best thing about having international, ill friends is that you can speak to them via Skype and Social Media without leaving your house! (Of course, I would love to actually spend time face to face with all of you, but online is incredibly convenient when you are ill and the best thing is that you each truly understand how I feel!)

Please take a moment to read The Spoon Theory, as you will see those words pop up all around the Blogging World, mine included. You are now apart of that theory, and have your own spoons to carry and allocate to your days. I also have numerous past blogs from my journey earlier on that you might want to navigate your way through from my main page.

I know this is a lot of information, so I will begin to tie this little chat up with a breakdown of what you have just read:

1. Make an Illness Folder
2. Learn to use Calendars, Notes and Reminders
3. Enquire about Illness Allowance or benefits
4. Book in to see a Psychologist
5. Be open-minded in trying new things
6. Trust your instinct, and be tough
7. Connect with others
8. Read The Spoon Theory

 

I just wanted to wish you the very best of luck on your journey, and remind you that you ARE strong and you ARE brave. Chronic Illness is the most terrifying, excruciating, distressing, confusing whirlwind I have ever experienced. It is okay to feel everything you are in this very moment.
It can also be lonely, but it doesn’t have to be.
I promise that it will make you appreciate and love much greater than you did before.
I am an email away if you need someone to talk to, vent to, or if you want to ask ANY questions.

To my usual loyal followers, if you can suggest anything you’d like me to add to this post to be of assistance to further sufferers, please comment below! I have no doubt that there are many things you wish someone told you when you first began your journey.

Until next time,

C, xo.

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12 comments

  1. What a wonderful post, very well written and very practical. If I may, I would like to add just one more point. Do not compare yourself with others. Just as unique an individual you were before the illness, you still remain unique, even in your illness. Especially in a disease like EDS-HT, the presentation and the response of the body to management strategies can be extremely variegated. Be kind and forgiving to yourself and your body, as you would be to your best friend if she was ill.

    Liked by 3 people

  2. Maybe to try to get a little exercise? I rehabilitated myself after a big relapse in the pool with an Arthritis Foundation aquarobics group – I got exercise, out of the house, and spent time with people! Also, great call on the psychologist! Bodywork, too!

    Liked by 2 people

  3. What a well written and easy to understand post! It really hit close to home. I really wish I had looked online for support and information earlier on, but better late than never. Definitely going to learn to navigate the notes and stickies section on my phone and make one to remember to ask my doctor for a copy of my file I KNOW I will forget otherwise. Thank you for this!

    Liked by 1 person

  4. Thanks for this. I’ve been wanting to meet with a psychologist just to vent, but I have so many doctors appointments I haven’t found the time. Maybe once I actually have a diagnosis. It’s nice to know I’m not the only one who thinks going would be beneficial.

    Liked by 1 person

    1. It really will be beneficial, and I recommend that you don’t wait for that diagnosis. If I spent my time waiting for a diagnosis, I’d probably be sent to an institution. I didn’t realise how much it was actually affecting my wellbeing, until I went there. I’m actually seeing a new one tomorrow! The one before didn’t turn out quite as I had hoped
      xx I hope you find the time to see one

      Like

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