Five Things I Learned? Only Five? Ok!

I remember watching a reality show where a group of people had to pitch their business ideas in the time that it takes the average elevator ride… So I will do my best to try and explain 5 things that would be helpful to remember when meeting someone (or loving someone) who has RA.

The top 5 things that I would want someone to know is…

[and the elevator door closes]

1. People with RA work very hard everyday to do anything. Imagine having all your bones broken and then someone tying lead weights to your body and then you must go about your daily tasks. Everyday. It is painful, frustrating and exhausting. Don’t ever assume that people with RA (or any Autoimmune Disease for that matter) are boring, lazy people. They are working hard just to do anything ‘normal’. Remember that AI sufferers have a 365, 24/7 job. Everything they do or achieve during this time is amazing and may takes them days to recover from and Flares will happen without warning. We never know when the next one will occur. Ever.
2. We are still the people you remember before we got sick. – Do you remember us as being funny, happy, laughing, creative, mischievous, nervous, perfectionists, shy, caring…? Well we are still in there! Our bodies have changed a lot but there will always be traces of the person you knew. And the person that you loved still loves you too. We love you more than you will ever know and we prove it by choosing to keep trying and living with the challenges.
3. You will not always see the pain, swelling, inflammation or disease activity. People assume because there are no visible signs of the pain that is inside us that it is not present or active. Wrong. Not everyone swells, becomes red, hot, inflamed or visibly broken etc. Just like a headache or migraine is invisible to the observer, so too is many of the pains and terrible suffering that RA patients go through. You may have seen pictures of some ‘visible’ disease activity in medical books or the internet but it is becoming widely known that not everyone will show visible signs and more often than not it is unseen without blood tests or bone scans. Because things can be happening at the cellular level they are not always observable.
4. There is still A LOT that doctors and specialists don’t know or understand about Autoimmune diseases. An awful LOT! If you ask a dozen doctors what they know about Autoimmune sufferers and diseases you will get a dozen different answers. They are all still learning and researching. The fact that so much is not understood is why they are so terribly hard to treat and are currently incurable. There is NO one doctor that knows everything and you should not rely on anyone to tell you how you feel. Autoimmune Diseases affect every part of the body in many different ways, which is why there are over 80 + different Autoimmune diseases and no ONE person that understands them all.  Resist the urge to impress Autoimmune sufferers with what YOU think you may know and what you believe. It would be much better if you simply ask your loved one or friend how they feel and assume that they are coping physically and emotionally as best as they can. Learn to listen and not make assumptions.
5. Its hard to face the fact you have a Chronic illness or a disease/s that have NO cure. Sometimes we don’t even want to believe it! Its hard to accept that is part of who we are now and goes everywhere we go. We are constantly told by society how we are the controllers of our lives and the masters of our bodies and our choices. The world does not like to accept that there are MANY things that are not within our control and are not acts of will or choice. (ie physics, nature, biology etc). A Chronic Illness is, by definition, something that we may have to learn to live with for the rest of our lives and this can be very, very difficult to the sufferers and take years to accept. Please show respect and empathy for this fact. Like losing a loved one, we carry the reality and losses for the rest of our lives so please show us the respect and courtesy of remembering that before passing judgements.

Its hard to contain many years of struggle and learning into 5 points but I think that if I had 5 minutes to tell someone 5 things about living with RA (and Autoimmune diseases for that matter) I would probably want them to know at least these things… but if ever you find yourself lost for words or not knowing the right thing to say, a hug can be the best thing that you could ever say and the only thing we may be needing to hear.

Gentle hugs,

Trish