Educating people is exhausting

Educating People Is Exhausting

I am a firm believer in teachable moments, and helping people understand the ins and outs of Rheumatoid Arthritis.

But lately, I’m frustrated. I’m feeling really sick and tired of trying to educate people and trying to get them to understand the limitations that I have because of my illness(es).

It has just become an exhausting pursuit, both trying to educate those around me and trying to educate total strangers.

I think what frustrates me the most is that there is such a high learning curve. The only people who really get it are those who also have RA – and I wouldn’t wish this disease on my worst enemy – so I think that means most people aren’t going to really understand it if they aren’t sick.

It’s also frustrating because I feel that for every twenty people I try to educate, only one or two end up understanding to a degree that is helpful.

Those are pretty terrible odds.

And I also wonder what the best way to educate people is.

Explaining RA, I don’t think I ever would have truly understood if someone would have tried to educate me about it before I got sick.

It’s the everyday ins-and-outs, the nuances of the disease that only I notice. And I don’t really think that can be taught.

Then there are also the decisions that come around medications and treatments, and life choices that are impacted by RA.

Of course, empathy is important, and maybe getting people to understand that you shouldn’t judge a book by its cover – and you never truly know what is going on in a person’s life, unless you ask them – are the best lessons that come out of trying to educate people about RA.

Because I don’t think they’ll ever truly understand the daily experience of the disease and all that goes with it.

I know some people have tried to show others what it’s like to have diabetes for a day (whether this works or not remains to be seen).

But the reality is, RA is a forever thing. It’s not going away. The healthy person can experience the disease for a single day, but they get to walk away. They get to be “cured” seemingly before they even have the disease.

They don’t have to wonder what their life would be like without the disease. They don’t have to worry that their future children might be impacted by the disease. They don’t have to think about all they have had to give up or lose at the hands of RA.

So what do we hope to do with education? What point do we seek to get across?

And how best to we do this in a way that is helpful for both ourselves and others?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (14)
  • Eilis Smith
    3 years ago

    I agree that in general others have difficulty with understanding some “invisible illnesses” Over the years I have come to the conclusion that in some cases understanding comes down to the genuine amount of interest and empathy the listener has. I must have explained the whole auti immune speill to my mother in law maybe fifty times she still does not get it. Sadly like others I have to bit my tongue and suffer “the slings and arrows of outrageous thought(s) “.

  • Pierette
    4 years ago

    Finally I found some one with physical job too. Oh my but the days are hard I am lucky tho my staff understand I have troubles and they are considerate.

  • Rosethe
    4 years ago

    It is so difficult when you don’t ‘look sick’. When you have a physical job, that no one knows HOW difficult it is for you to get through the day.
    I am tired of all the anecdotal cures presented by friends and family too. Oh, poor stupid Rose, if she would just try *insert cure here*. From smoothie drinks that helped a friend’s husband (who did not have RA) to essential oils, to rowing machines. People think whatever may have helped their situation is bound to help mine.
    It is well said that ‘why would we continue to seek Dr’s treatments, infusions, etc. if a plain and simple cure was out there??”

  • Darla
    4 years ago

    Thank you all for your kind support. So glad I found this site. You lift me up. When
    I read about your experiences, advice, and stories, it helps me learn how you all
    manage. Bless you all.

  • Connie Rifenburg
    4 years ago

    I think it has been said before, but I will say it again in this conversation because I believe part of the problem in getting people to understand our disease, is because of the word “Arthritis”. If you have Lupus, people don’t try to tell you how they have it “here”, or their aunt had it in her fingers and could tell weather by it…or whatever. If they had named the disease something different than the common name the everyone “thinks” they know about, I believe half the battle of understanding would be won.

    I do find it difficult to think that an RN does not understand the background and idiosyncrasies that are peculiar to RA. Yes, we all know that many people benefit by mild exercise – stretching and some diet changes “can” help, but those are two of the most misunderstood recommendations I’ve had people give me.

    If exercise and diet could cure RA, would we continue to suffer because we just don’t “want” to do that? I can’t believe people can truly believe that about us. If diet and exercise would “fix” the problem, would all of us willingly submit to daily/weekly/monthly injections/infusions/10s of different kinds of medications – most very expensive – and most carrying severe side effects including cancer, severe viral/bacteria attacks, and death… just because our fingers,knees,shoulders, back, etc. “ache”?

    Most of the time, the people who question you about your symptoms are those that are more than casual acquaintances because, other than small children who might make a blunt assessment of what they see – a cane,a wheelchair, our hands or feet- those that deal with our ups and downs are most likely family or close friends.

    Why then, can’t they understand that when we say “we’re too tired to do this or that” or that ‘I’m just not up to it today”, doesn’t mean that tomorrow, or the next get-to-gether might catch us on a good day – so keep asking? My experience has been that once I’ve turned down a ‘friend’ several times or had to cancel at the last minute, or overslept a meeting time, they will gradually back away from even asking me to do anything anymore.

    This stings my heart. I know – better than they do – how frustrating this kind of lifestyle really is. Would I be as patient as I’m asking them to be if I were the healthy friend? I like to think I would be, but maybe that’s just because I’m on the other side now and would have more understanding.

    I compare this situation sometimes to how I feel about people with Alzheimer’s now. My mother, RIP, had early signs of it in her 70s, yet she looked and acted fine for long periods until the disease began to effect family gatherings, misunderstandings, financial dealings,and all those things you watch your parent lose, little by little. I learned so much about loving and giving, but also hurting and anger during that terrible disease.

    So many things I didn’t understand about it, I now know. I would love a “do-over” with my mom. I would act differently knowing that it was the disease and not the person. We (the family) just didn’t understand the things we needed to know to help and enjoy those last few years. But I do now, and I want to let other grown children who are dealing with their parents, know and understand what to expect, what things help or not (not always the same, but many things are similar in the disease) just like us. Different but Same.

    So, when I get frustrated at others who simply don’t understand my disease, I think of my mother and know that one day, those friends or family, may wish to have a “do-over” too. And I’d let them. 🙂

    And Darla, I completely understand when you say “I’m trying as hard as I can”.

    Sincerely,
    Connie

  • Kathleen Pimlott
    4 years ago

    I am having a really hard time with a woman from church who just cannot understand why I can’t do some of the outreach she has assigned me to do. I feel VERY judged and am clearly not measuring up to her standards. I have tried twice to explain very clearly what I face every day, but she assumes that because I am retired (actually I left work because I am DISABLED) that I can go and do endlessly, running up and down stairs and walking long distances to visit others. I am trying hard to be patient and to remind myself that she really has no clue and it doesn’t matter how many times or ways I try to explain, she will never understand or be okay with the limits I have to set. I am just so sad about being perceived as a total loser and slacker. I keep telling myself that it doesn’t matter what anyone else thinks. My Heavenly Father knows my heart (and my disease). But I am still sad.

  • Leslie Rott moderator author
    4 years ago

    This sounds like a really frustrating situation. Sorry you are going through it!

  • Pierette
    4 years ago

    Hi. I say stop trying. That saying “me thinks thou dost protest too much”. Comes to mind. I have come to the realization I do not need to prove to anyone I am sick (feels like I am doing that rather than educating) so I just say this is what I need or thanks for the info or no. Makes my life simpler and less frustrating and let’s face it stress is NOT good for us. It’s my life I will do what I can and if I can’t I will not worry about it. I try to keep telling myself that every day. Smiles and gentle hugs to all

  • Darla
    4 years ago

    You sum it up so well. I have tried to explain it to my Daughter, the R.N. I cannot understand why ,she just doesn’t get it. Tells my husband to be sure I exercise and
    watch my diet. This was during a six month flare. I could barely walk to the bathroom. On pain meds daily just to function ! Keep hearing myself saying, I am
    trying as hard as I can.

  • Kathleen Pimlott
    4 years ago

    Gentle hug!

  • Patty
    4 years ago

    I know….oh, I so know…xoxo

  • Carla Kienast
    4 years ago

    Other people’s ignorance is one of the more frustrating parts of this disease. It’s not bad when they don’t say anything, but when they start in with, “You’re too young …” or “My aunt had that in her finger …” or “Did you try taking this potion I found on the Internet …” Talk about stress aggravating the RA symptoms! When this happens to me, I just tell people that I have rheumatoid arthritis and that the day is not one of my better ones. If they ask more then I answer more. Good luck!

  • Maggie
    4 years ago

    I totally understand…. education is POWER, but…..like you said some folks you take a long time trying to educate just don’t get it..even my husband, does not fully understand my pain. Only once did he say he could kind of “feel my pain” and that was when he was passing a kidney stone…not funny then…but it is now 🙂 I said try feeling that sort of pain all day…and I’ve had 4 back surgeries, a spinal cord stimulator and a morphine pain pump put in too.

  • Leslie Rott moderator author
    4 years ago

    Maggie,
    Thanks for your comment and sharing your experiences. You made me smile1
    Leslie

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