Explain your RA #RA Blog

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RABlogbadgeToday’s blog prompt is how I explain my RA to others.  When I meet new people, or even when friends whom I’ve known for ages suddenly ask what it’s like.

RA is like a box of chocolates – you never know what you’re going to get. But instead of the potential being caramel, or nuts or strawberry cream, your options are far less fun.  Pain, fatigue, organ damage, disability, isolation, depression.

In fact, instead of never knowing what you’re going to get, the question is more like what you’re going to lose.  Lovers, friends, family, career, your financial future.  Your hopes and dreams.  The person you once were.

In the beginning I found it hard to explain RA.  I have my elevator pitch now :

‘RA is an autoimmune disease, unlike osteoarthritis, which is more common, less serious and caused by wear and tear and general aging.  RA is a systemic disease and it’s about more than joint destruction and pain. It can attack your internal organs, including your heart, lungs kidneys.  It can also affect your eyes.

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It’s a treatable disease, but there is no cure. And a large minority of people don’t respond to any of the current treatments, and live in constant pain and do become disabled, so more research and awareness is needed.’

I usually get to somewhere around ‘osteoarthritis’ before I notice that people’s eyes have glazed over and they aren’t listening. Or they interrupt or change the subject.

Now I just say RA is like being hit by a bus every day.  You’re not sure if it’s going to run right over the top of you and leave you with every bone in your body broken, of if you might just get a glancing blow today, and maybe only have broken hands and feet.  Or hips. Or knees.  It can affect any or all of your joints at once.  And it can damage your internal organs too…like being hit by a bus.

Of course people think I’m exaggerating.  I’m not.  Most days I get run over by the bus.  I get knocked completely flat, with most of my joints inflamed and painful.

I take a range of medications to try and manage my disease.

Disease Modifying Antirheumatic Drugs (DMARDs) work on the disease process itself.  On modifying the disease, and hopefully getting it into remission.  There are range of DMARDs and Biological DMARDs, but not all of the work for everyone. It’s impossible to predict who will respond to which medication.  And some people respond to none.

Corticosteroids are powerful anti-inflammatory medications.  But the side effects from long term use are so devastating that they should only be used short term.  Some of us, however, have no choice but to take them long term, or live with unendurable pain levels.  They are usually prescribed as a ‘bridging’ medication, because DMARDs can take several months to work.  Prednisone is a corticosteroid commonly prescribed to provide symptom relief until the DMARDs have a chance to work.

Non-Steroidal Anti-inflammatories (NSAIDs) reduce inflammation, and provide pain relief.

And narcotic pain medications.  In severe Rheumatoid Arthritis, the pain is such that narcotics are required.  Nothing else will touch this level of pain. And narcotics just take the edge off.  I take them daily, and have done for many years.

It’s also pretty common for people to jump in with ‘I have a friend/Aunt/boyfriend’s best friend’s Step-mother who has RA’

I tell them that every person with RA is different. That the disease varies widely in severity and how it impacts a person. Which joints it attacks. How many joints are affected.  Whether the disease is systemic, with organ involvement.  All of these things have a huge impact on how RA affects their lives, and their capabilities.   No two people will be exactly the same, nor follow the same disease course.

So while I’m glad their friend can run marathons and climb mountains and work an 80 hour week, I can’t.  I’ll cheer their friend on with gusto though!

The stats say that most people who have RA have mild RA (70%), and respond well to treatment.

I’m not one of those people.  I’m at the more severe end of the spectrum, and I have not responded well to any of the eight disease modifying medications I have tried thus far.  And these are serious medications, that come with a range of potential side effects.  The most severe of all being death.  As side effects go, death is pretty big one.

Of course that’s very rare.  But it’s real.  And while I don’t focus on the risks, I have to be aware of them.  And take sensible precautions.

Trying to keep my disease under control involves suppressing my immune system.  That means I am more susceptible to getting sick.  I have to avoid sick people, because not only do I pick up bugs and viruses more easily, my body can’t fight them off as well either, and I take longer to recover.

The number one thing I try to explain is that most of the time RA is completely invisible. Sometimes there might be some redness or visible swelling in joints. Sometimes there are visible deformities.  But most often there is nothing to be seen.

That does not mean that there is no pain, or no disease wreaking havoc.  It means when someone admits that they are in pain, please believe them.  Most often it’s extremely hard for us to admit that we’re hurting badly.  Or that we need help.

Just believe them.  Ask questions. Listen to the answers.

Don’t tell them about your friend Sarah who had that but she is all better now because she tried xyz…  That’s great for Sarah, but believe me, every person with RA wants to get better, and has probably tried everything and more.  It’s a frustrating disease for rheumatologists to treat, because the response to medications is so individual, and so unpredictable.

And sometimes there’s just nothing to be done.  Sometimes nothing will halt the pain and fatigue and destruction of joints.  The organ damage, and failure.  And sometimes people die from RA.

It is very rare. But it happens.  Most of us don’t focus on it.  We don’t think about it.  We don’t let RA become our whole world.

Because we’re too busy living our lives, the best we can.

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6 COMMENTS

  1. I too am one of the non-treatable patients who’s been on every oral medication (except for that one that you can’t take if there’s even the slightest possibility that you may eventually, one day want to even have a thought about having kids). They’re starting me on biologics now.

    I dread the “boyfriend’s best friend’s step-mother” conversations. I appreciate their concern and sympathy, but D-R-E-A-D those conversations.

    • Me too Nicole! I am better at them than I used to be though. At first I tried every idiotic remedy that people suggested (japanese sour plums, anyone? LOL). Then when I realised that none of it makes any difference, it used to really upset me. I’d get so angry and upset…how could people not realise that I was really sick and that chia seeds in a smoothie couldn’t possibly fix something so serious! Now I try to be gracious and say ‘thanks, I’ll look into that’. IF they are a nice person that I care about…lol! Good luck with the biologics – they give many people their lives back! I very much hope you’re one of them!

  2. I love the analogy of Ra is like being hit by a bus. Wow you said a lot there. From now on that will be my response. Thanks, it is officially stolen.

    rick

  3. you related so many of the “truths ” of RA. If it is n individual disease and it is thanks for finding so many common threads.I’m personally in a difficult place on short term disability since 7/27/15,return uncertain. Despairing that even my most supportive doctor may be afraid to face the level of disability RA is causing in my ability to navigateADL’s.YET every day I try again to do what I can to face the biggest hurtle I have faced since diagnosis in 6/2011. Like you I have a severe form and now pulmonary hypertension and heart diastolic dysfunction.Every day I am walking ,trying to keep moving and I am grateful for what I can still do.Your article stuck a chord and I guess my lesson is to enjoy what I have and to let go of fear. Truly to live without RA taking over you life is a victory,currently elusive to me.KEEP ON thank you for a wonderful article

  4. I like the idea of having an elevator pitch, it’s just asked so often that it comes out of our mouths without even thinking. Unfortunately, medications are part of our lives otherwise the side effects of RA will damage our lives forever. Great post!

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