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Frustrations And Getting An Education In Chronic Illness

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Karen Graham, Contributor
Thyroid Nation
Karen shares her suggestions to help educate family and friends about chronic illness.

As a long time sufferer of chronic illness you are likely to now understand what is
going on with your mind, body and spirit far better than anyone else, including
your medical team. Of course in this, the is the age of the internet, you have at
your fingertips a wealth of knowledge and information (some good, some less
than great) You have joined various online support groups. Hell, you even offer
advice to fellow sufferers of your disease.

But this is a time to stop and think.

How often do you hear people who are chronically ill say,

“I’m single.”

“I’m divorced, my partner didn’t understand.”

Are you one of these people? Far too often you hear,

“My partner just doesn’t get it.”

“My parents/kids just don’t believe me.”

WHY is this?

One word;  Education. Or, lack of education.

Chronic Illness 101

Think about it. You have been sick for many, very long years. You have read
this article and researched that one. You have regularly visited the GP/PCP,
you have sought help from a Naturapath, and you have another appointment
with a Specialist next week.

How much of this have you shared with those close to you? Little to none, is
probably the answer.

You likely live in a world that is consumed by your illness.  Your life is adjusted
to work in partnership with how you feel and what you can tolerate at any
given time. But as you have made these adjustments, along the way you may
have just forgotten to include those closest to you.

How many times does your partner sit at the computer with you while you
Google ‘hives and low temperature,’ or ‘weight gain with exercise’? The
answer is likely never, because they are probably at work, or asleep in bed,
while you type frantically at your computer, as your insomnia gives you a good
ass kicking.

How many times has your partner attended a doctor appointment with you?…
Um, never, right?

If you consider a four year illness, that is as close as it gets to the number of
years you need to be studying for and gaining a degree in medicine. Consider
next if you will, how often you have spent on the computer doing research,
time in the doctor’s office discussing symptoms and action plans, during that time.
How many lists and folders of symptoms, reports and studies have you
amassed?

OK, so this paints a clear picture of how a chronic illness affects your life.
But what about those around you?

Frustration is felt by those around you.  And just like you, they will likely also
feel sadness, anger, perhaps even loss. Yes, it can be compared to a
bereavement.  The loss of the person they once knew.

Then you must consider, is this what they signed up for? What if the tables were
turned…. Could you live with someone who was chronically sick, like you are?

So the picture is a lot clearer now. It really puts a new perspective on things.

Understanding Chronic Illness

Those around you cannot possibly understand how you feel.  That is a crazy
notion. But yet, you continually ask yourself this; “Why don’t they understand?
Why don’t they believe me?”

First of all they don’t live it. They live near it. They cannot possibly
understand. Secondly, they are not well educated on the topic.

We all know of an illness called Cancer. We all know that it makes you very
sick. Of course we are aware it can be terminal. We hear about it all the time.
We are educated about what causes cancer and how to prevent it.

But whoever heard of Hashimotos Thyroiditis, Lyme disease or Cushings
Disease?  Right?

As the owner of a chronic illness, it is sometimes difficult to communicate
how and what you are feeling. So often doctors tell you that you are
depressed or you have Fibromyalgia, the most recent diagnosis for a chronic
illness that your doctor cannot figure out, or is too incompetent to
investigate.  You believe this, because it’s what your doctor tells you. Your
doctor will then readily push pain and anti-depression pills on you and
write you off.

Eventually though, most of you win. Through discussion with others like
yourself, through research, through sheer bloody mindedness and a will to
survive, you come to a place where you are in control. A place where you
have such a good understanding of the situation, that you are able to
communicate with confidence to your medical team. You learn to question
decisions by your doctor, and you even offer up suggestions of your own as
to how your treatment should progress.

Along the way, would it not make sense to share this knowledge and
understanding with those close to you?

It is not a good idea to constantly tell your family what hurts, how bad the
pain in your head is, or how many times you threw up today. And, if they
are involved in your care and understand the situation, the need to
constantly re-enforce the fact that you feel sick, will eventually become
unnecessary.

Establish some guidelines. Rules, if you will, for the wellbeing of everyone
involved.

Firstly, a discussion is critical. A meeting of minds. A real conversation
about how everyone concerned feels. Where everyone stands. If there is
no understanding and no communication about your chronic illness, it’s
a given that 9 out of 10 times, the listing ship will sink.

Express to your partner that you want to have a more productive and
active life, but if that is to happen then “this is what we need to do to make
it work.”

If your partner is invested in the relationship at all, they will inevitably
open up and offer some insight into how they feel,too. They will probably
be emotional, but relieved.

If your partner keeps a closed shop then be proactive. Ask them what
their frustrations are, what they need to know. Share the relevant
information that you have gathered. Draw pictures or make an easy to
understand graphic, if that’s what it takes.

Use websites such as Thyroid Nation and Hypothyroid Mom. Pose
questions to chat room allies to gain insight and to further educate
yourself.

In sharing knowledge; make up a simple list. Bullet point your
symptoms and if you know why those symptoms are occurring, write a
short explanation next to it. Go through this with your partner/family
and allow them to ask questions.

Mary-Shomon-Book-Thyroid-Nation-Ad2Imagine a scenario that has likely been happening for a long time; Yournpartner comes home from work after a long, hectic and frustrating day and asks “how are you?”…. do you focus on the positive and say; “I read
two chapters out of that book by Mary Shomon today, it provided me with some useful information.” It’s very likely that you didn’t say that, but that will always sound better than, “I felt like shit all day, so I went back to bed.” which is what you actually told them! If you start to focus on the positive, it will lessen any tension and it will help your well being
too. Focus on the negative for any period of time and it is guaranteed to make you, and those around feel worse, and it will be destructive in the long run.

It’s ok to have an ‘off’ day or to feel sorry for yourself. Everyone does it.
Just don’t unpack and live there, in that moment.

It certainly is bad enough that you have to deal with the enormity of
what is chronic illness. Give those around you the tools to understand
and support you in your journey, and you will not believe the changes.

Learn to work around your illness and with your family. This isn’t just
their education, it’s also yours.

  • If you need to nap in the afternoon, but the family wants to go to the
    mall for the day, compromise. Nap a few hours earlier than usual and
    head to the mall a little later. It’s likely open until 9pm.
  • If there is a show you want to see, make sure the family knows you
    need to rest the day before and take it easy on the day of the show.  The
    laundry can wait two days.
  • If your partner wants to go for a walk and you tire easily, suggest an
    evening outing when it’s cooler, and after you have had some rest.
  • Stand in the backyard and watch the Aurora Borealis at 1 am, in the wee
    hours of the morning together. You are awake anyway!
  • Make exclusive time for your partner, even if it’s just a few hours
    weeding the yard, as the sun comes up.
  • If you feel good, be spontaneous. You may be tired the next day,
    but you will learn to adjust accordingly.

Learn From What You’ve Learned, About Chronic Disease

Give your partner space. Just because someone is not at work, it
doesn’t mean they have to spend all their free time with you. If you
give a partner space to breathe and think, it’s likely to bring them
closer to you.

Learn that nothing is as important as your happiness and the
happiness of those around you, but in order to get to that place
everyone must be educated and learning is a constant process, so you
must all be a work in progress.

Life is one long learning experience and education is key.

Stay up-to-date, get tips, articles and stories that inspire, on all things thyroid!

About the Author

Karen-Graham-ProfileKaren Graham HNC, was diagnosed with Hypothyroidism in
2013, Lupus in 2014 and Cushings Syndrome in 2015, all after
becoming chronically ill in 2011. On reflection, Karen now
realizes that symptoms of her illness that she can remember,
began as early as age nine. She has a background in
Hairdressing, is Certified to teach Esthetics and studied Anatomy
& Physiology and body treatments as part of her HNC in Esthetics/Beauty Therapy,
which she gained at Kilmarnock College in Scotland. Her hobbies include writing a
music blog as Headbangerwoman.com and looking after her Bantam Bulldog family.
Articles by Karen are all written using personal experiences. All rights reserved. No
use without express permission of the author.

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