living with an invisible illness like RA

I See You

A SHOUT-OUT TO THE PEOPLE WHO:

-Have symptoms that aren’t visible
-Are able to function while in extreme pain
-Don’t “seem sick”
-Are exhausted but still trying
-Are fighting a battle most people don’t understand

I see you. I am proud of you.

(via @positivelyrheumatoid)

I came across this quote/meme on Twitter recently that made me stop and look at it again. Usually, I quickly scroll past most things on social media, but this one caught my attention and held it long enough for me to write it down myself. I didn’t want to forget it. I wanted others, more people, especially non-chronic illness people (family, friends, caregivers) to see it too.

Invisible Symptoms

Most of my RA symptoms (pain, stiffness, fatigue, malaise, fevers, medication side effects) are not visible. Unless you look really closely at my swollen right foot and ankle or slightly misshapen and damaged right wrist, you would guess that I’m a healthy person and not struggling with immense pain every day. The cranky look on my face (hopefully it’s not a permanent fixture) or an occasional limp might also give it away, but most of the time people have no clue that I have RA. They don’t know how hard it is for me to walk around at a shopping mall, clean the house (or anything!), or just get out of bed in the morning.

Living with an invisible illness is difficult because you’re constantly at a crossroad of sorts about how to live your life in an able-bodied society. I want to be “normal” and healthy. I don’t want to be treated differently: discriminated against or condescended to with awkward “sympathies” or pity. Yet at the same time, trying to live as normal and active a life as possible with chronic pain is nearly impossible to do without feeling extremely lonely and isolated. Why? I have a secret life. It’s a life full of great pain and sadness and struggle, and one that most people can’t know or understand. There are many times I wish they could.

Functioning in Extreme Pain

One of the many reasons that those of us living with RA are “warriors” is because of this fact alone: we function and live while being in extreme pain. And most of the time, nobody knows it. We crawl out of bed in the morning and drag ourselves to work. We cook, we clean, we drive, we go shopping, we take care of kids/spouses/parents, we attend family gatherings, we meet with friends, we go to never-ending medical appointments, we travel, and we do a million other things. ALL WHILE BEING IN PAIN! Always. Always, always, always! We keep going and moving forward despite often wanting to just curl up and sleep for 100 years. Most people don’t realize what a huge accomplishment this is.

“You Don’t Seem Sick”

If you have RA or another “invisible illness,” you’ve probably heard this a lot: “But you don’t seem sick!” If you’re also young, add the “well-meaning” exclamation of, “But you’re too young!” to that. Well, I’m sorry to trick you here, but I am actually sick. I’m young and sick. And then once you try to inform the person who is insisting that you’re too young and healthy-looking to have a chronic illness, the topic is often awkwardly dropped and you go back to talking about how the world is probably ending soon or some cute picture you saw on Instagram. We RA-ers get pretty good at honing our acting skills and blending in with the rest of the able-bodied world, yet, we are “sick.” We’re sick in body and spirit yet we persevere. And that’s pretty awesome.

Exhaustion, Resilience

RA is exhausting in so many ways. Pain alone selfishly sucks all of your energy from you. Fatigue is also a common symptom of RA (so is anemia), which many people don’t realize. Also exhausting are the demands that having RA puts on a person: countless medical appointments, financial struggles and medical debt, frustrating phone calls with healthcare providers and insurance companies, pharmacies that can’t or won’t fill prescriptions, incompetent doctors/nurses, and of course the mental and emotional stress of simply living with the constant unpredictability of this disease. You never know when you’ll have your next flare-up or if your insurance won’t cover your bills.

It’s exhausting–all of it. But I’m still trying to keep moving forward and to live my best life possible. I don’t want to give up.

Invisible Illness

As I’ve already said, living with an invisible illness is body and soul-crushingly hard. And it requires a lot of strength, perseverance, resilience, and courage. To my fellow RA friends and everyone else who quietly struggles with chronic illness and pain every day, I want you to know that I see all of these things in you. I SEE YOU. I do.

You are amazing. Please never forget it.

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 (23)
  • judy_c
    7 months ago

    Thank you for writing this! I needed it right now as I’m sitting here wondering if I have the energy to have a friend over today as is planned… which means at least cleaning the bathroom, not to mention the dishes. Fatigue is hitting me hard and it’s so frustrating that I can’t pull it together when I look so “normal” on the outside. It’s hard to have grace for myself. But maybe I’ll just send her a text and cancel for today…and give my body a break.
    Thank you for sharing this, well said.

  • Mary Sophia Hawks moderator
    7 months ago

    Angela,
    I see you too! Brilliant article. Perfectly states all the issues we face each and every day. Thank you!
    MS

  • BANelson
    7 months ago

    I needed to hear this today. Heck, I need to hear this everyday. Some of my co-workers know my diagnosis, most don’t. Only my closest friends know. Some members of my family have been the hardest to accept that I’m the same person, but with different limitations. I work in healthcare and recently I was part of a discussion about chronic pain, pain contracts and ER “frequent flyers”. I manage my pain OK, and have yet to make my first trip to an ER. In this meeting a co-worker, frustrated by the abusers of the system, simply said “they just need to learn to get over it”. That comment pierced me like a knife–and I’ve never been able to address her, because I will feel as though I failed in my quest to manage my illness and my pain. But I have changed medical providers because I felt one provider could not–or would not understand just what my pain tolerance is. Anyway, thanks for sharing.

  • Mamawsherbear
    7 months ago

    Thank you for this article its a perfect description of how i feel and im sure many others do as well i personally think one of the hardest things for me is trying to get others to understand what a struggle this truely is if RA wasnt enough by itself i also have OA,fibro,degenerate disc,neuropathy and the list goes on i DONT want pity or anyone to feel sorry for me but i want them to understand i have NO control over this in the sense i cant help it if i have to cancel plans because of a flare when im in so much pain i dont want to be around others ,PAIN makes me grouchy which is so unlike me its just not my personality i hate what pain does to a person but literally suffering 24/7 is hard and its also hard mentally because you have to except the fact that this is not going to get better its going to get worse as you age to me its almost like a death say goodbye to your old life and hello to your new life and learning to do things differently ,and learning to just let some things go so you dont drive yourself and everyone around you nuts lol .Thank you for seeing us ,we also see you.God Bless You

  • Duff
    7 months ago

    Thanks for sharing.
    RA fatigue kicks my …a lot ….but, RA will NOT beat me.
    You’re amazing too.
    Sincerely.

  • Padram
    7 months ago

    Thank you for sharing the Quote. Living with 2 Auto Immune Disorders, I never have a dull moment . Wonderfully written, dear. Yes, we certainly don’t need pity, but we do need understanding. However, this understanding is so hard to come by.

  • RHPass
    7 months ago

    when my husband explains to other family members how I am doing, I often get angry that he over-exaggerates so much. and then I realize HE’S CORRECT but I am really angry at my RA! fighting my doctor over adequate pain mgmt in light of all the outrage over ‘the epidemic’ is exhausting, just one more energy sapping battle.
    Angela- I SEE YOU TOO! Thank you for writing this!

  • gnb2975
    7 months ago

    This was so well-written and oh so timely! I’m a teacher and going to work every day is SO HARD that most days I melt down when I get home. Thank you for this affirmation, appreciation and acknowledgment for all we are going through!

  • stephatkins
    7 months ago

    I’m also a teacher & it seems to get harder & harder each day. As if RA wasn’t hard enough it (RA) is now causing nerve damage & neuropathy in my legs & feet. So, now I have pain on top of pain…..and I fall.
    Thank you for this article. I really needed to connect with people that truly understand the pain & complexity of RA.

  • jkmast1
    7 months ago

    Angela, You made me cry. A good cry. You said it all with elegance and grace. It’s affirming and joyful. Thank you.

  • Angela Lundberg author
    7 months ago

    Aww, thank you for your comments. I appreciate it. 🙂

  • Monica Y. Sengupta moderator
    7 months ago

    I am so glad you liked this article, jkmast1! It also resonated with me in a very deep way. I wish you all the best, thanks for sharing! ~Monica

  • mrs. od
    7 months ago

    One of the best articles I’ve read describing RA and it’s effects. I wish everyone who knows me could read this and truly understand how hard it can be. But I feel uncomfortable sending them these links as it seems like I’m looking for pity but I’m simply hoping for them to really understand RA and it’s miserable daily effects. And how it’s caused me to change both physically and emotionally. Thank you for writing this insightful piece.

  • Susan
    7 months ago

    Thank you for this article! Exactly how I feel, unfortunately my family & friends are not able to understand. I agree w/ others… the fatigue is exhausting, managing Ra is a job. Thank you again for such wonderful support !!

  • Monica Y. Sengupta moderator
    7 months ago

    Thanks for sharing, Susan! Please know you can come here whenever you need extra support or just want to chat. Unfortunately, it’s very difficult for most people to understand what we are going through so know you can always come here! Gentle hugs ~Monica

  • gottabefree33
    7 months ago

    I love this! It is the best description of what I deal with as a person with RA. The fatigue is the worst part as of now.. thank you!

  • Angela
    7 months ago

    Thank you for this article! Sometimes I wish people could walk a mile in my shoes, live a day with this disease. Though I wouldn’t wish RA on my worst enemy it would be nice if day my husband or my boss could feel what I feel every day of my life.

  • RHPass
    7 months ago

    that is all I ever say to my doc, “I wish you could be ME for just one day”. but her reply is always “I thought you liked me”…..

  • pstephan
    7 months ago

    I share many articles from this site – this one, in particular, made me cry and smile at the same time. I see you, too.

  • Angela Lundberg author
    7 months ago

    Aw, thank you so much. 🙂

  • cheeflo
    7 months ago

    Me, too.

  • KerryW
    7 months ago

    Oh my gosh, you describe it (chronic illness, RA) perfectly. It’s so true. Honestly, I think all of us who suffer everyday, always, always ,always, ARE THE STRONGEST people on earth. Great article, thank you.

  • Dave
    8 months ago

    Thanks for the encouragement, I needed that!!!!!

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