11 Things I wish I Told when I was Diagnosed with Rheumatoid Arthritis

17-things-people-with-chronic-pain-are-tired-of-h-2-18656-1427817839-0_dblbig

At 15 I was diagnosed with Rheumatoid Arthritis , the doctors and nurses talked a lot and explained lots of medical terms to be but there was lots they just couldn’t have known. These is my list of the 11 Things I wish I had known when I was diagnosed with Arthritis

  1. ‘At the moment, there is no cure, but that doesn’t mean no future.’

Arthritis is something that is ‘managed’ and not cured. It is something you will have for the rest of your life and will affect you every day. However, you will still go on living. Things will be harder for you than most, but you still have so much potential and so much life to live. Arthritis may slow you down sometimes, but there is no need for it to stop you.

  1. ‘It is not something to be embarrassed about.’

Sometimes when you need help undressing or get locked in the bathroom because you can’t unlock the door, you will feel utter mortification. Stop…it is fine. You need help or take longer to do things because you are unwell. You are not useless, stupid or an embarrassment. You didn’t ask to be sick it just happened, and it is nothing to be embarrassed by.

  1. ‘There will be lots of bad days, but there will be lots of good days.’

You will have days where you can’t physically get out of bed, and it feels like the world is an incredibly unfair place (it is), but then you will have days where you laugh your butt off with friends and family or can manage a long walk or do something really impressive like dance all night! Unfortunately, you have to take the rough with the smooth, and there will be lots of smooth so don’t worry too much.

  1. ‘”Normal” People will never really understand.’

People without arthritis will never understand a 100% what you are going through. Some will try, and that is wonderful, but they will sometimes say the wrong thing, be confused as to how you can do something today but not yesterday and will every once in a while get frustrated. It is not always the case that they don’t care or don’t believe you it can simply be a case of confusion.

  1. ‘You have to grieve the old you to make way for the new you.’

The old you might have run marathons all the time or worked every hour god sends. The old you might have been able to go out four nights a week, not a bother. But you are no longer the old you. You have the same personality as the old you and hopes and dreams as the old you but you have limitations now, new fears and concerns and new priorities. Before you can fully make way for the new you, you need to accept the old you is gone.

  1. ‘Tell people when you can’t do something. It’s okay.’

Sometimes you won’t be able to pour a cup of tea from the pot or cook the dinner or carry the box from the lobby. Whatever it may be and you need to tell people that. You need to be honest because pushing yourself to do it when you can’t, will leave you in agony and not doing it at all will only frustrate those around you. Just explain you can’t. This is something I still struggle with 10 years on but it is a learning curve and its always better to just say ‘I can’t ‘.

  1. ‘It is okay not to be okay.’

You don’t have to pretend you are fine all the time. Sometimes you won’t be fine. I am not saying stop everyone on your way to the shops or into work and tell them ‘You know I am not ok’ but when a close friend or family member asks ‘How are you?’ you are allowed say ‘Not that great actually’. That’s why we have friends and family members and being honest about when you’re not ok is much better for your mental health.

  1. ‘Tell your Doctor everything.’

Tell your doctor when you feel like the medicine isn’t being effective anymore, or when you have developed a new symptom, side effect or pain somewhere. Hiding it is not going to make the appointment go quicker or make you feel any better.  Your doctor is there to help you as best as they can, they can’t do that if they don’t know the full extent of what is actually wrong.

  1. ‘Laugh about it.’

Sometimes you have to laugh and find some humor in the situation. Funny memes or cracking the odd joke about yourself or your condition can help. Laughter is the best medicine after all.

  1. ‘Cry about it.’

Yes, cry your heart out because it sucks and it happened to you, and you deserve to let all the frustration out. Cry because you’re mad and sad and cry because you are in pain. Don’t hold that in all the time. Once in a while, you need to let it out and throw yourself a little pity party which admits one.

  1. ‘Never give Up.’

Yes, there is no cure, and yes it sucks, but that doesn’t mean you give up. Life is for the living and you are included in that. In today’s modern world there are tools and gadgets to help you achieve all sorts. There are ways and means to conquer your dreams. Where there is a will, there’s a way so never stop trying.

 

This post was originally published by Arthritis Ireland on their Blog. For more stories you can follow me here or on Facebook.

Advertisements

24 thoughts on “11 Things I wish I Told when I was Diagnosed with Rheumatoid Arthritis

      1. I agree. Just the year before I was diagnosed, I was mountain biking, gardening, I was strong and capable. Now I can barely carry groceries. I have to run but I will come back and read your other post. I’m glad we have others that can relate to chronic illness/pain, it helps. Love to you ❤

        Liked by 1 person

  1. Great post!! I was in denial for a while, it is tough to accept that all of a sudden so much has been taken away from you. It is hard to when you try to explain to your kids why you can throw/catch a softball or football with them when you were able to do it a couple of month ago with no problem. One of these days I will learn I am not the person I was 2 years ago. Thank you for your post, it really helped!!

    Liked by 1 person

  2. This is all so.true and so sad I got diagnosed with rheumatoid arthritis and osteoarthritis in October 2016 it has changed my life alot with work moods pain but worst of all my training I was a elite marathon runner now I can hardly train I struggle to work and I get very down with it . I have always been a fighter and I never give up but this is a tuff one .
    Sarah Anne

    Liked by 1 person

    1. Hi Sarah Anne, thank you for your comment! Yes it is so tough and can be such a hard thing to deal with. I can’t imagine having been a marathon runner and now struggling with this. There is an Irish man I know who blogs about being an athlete and having arthritis. I’ll link you his blog too! 😊👍🏻

      Like

  3. I am in the long process of getting diagnosed with an autoimmune connective tissue disease, and just had the RA tests re-run last week due to new symptoms. I have an extremely high ANA titer and like you all said I went from being an avid runner/yogi, and very active individual to barely being able to get out of bed somedays. It’s hard when your mind wants one thing, but your body holds you back. I wore heels & danced at a wedding this weekend and am paying for it now, but it was worth it!!

    Whether I have RA or a different autoimmune disease, I am no stranger to chronic illness and I love your post! I think letting go of the old you to make room for the new is the hardest, but it will make you a better person for it. I struggle with the guilt of having to take medications daily, but I have learned that its okay because if it allows me to be closer to normal its worth it for now! Keep the good content coming! Sending healing vibes to all of you!!

    Liked by 1 person

    1. Aw thank you so much for your comment! Yeah sometimes you just have to choose what’s worth and and feck it and go for it!! Thanks for reading and I love the positive attitude! Keep going!! 💕👌🏻💕👌🏻💕

      Like

  4. I loved your piece it’s great thank you 😊
    I was diagnosed 10 years ago and have tried to soldier on ever since,people don’t understand and family can just expect that you will continue to do what you have always done.
    I have been lucky with meds they have worked well for me but the last year or so I have been going down hill quite fast losing a lot of strength In my whole body and the pain is just horrible some days I’m finding I can’t work like I used to,I have to sell my business because I just can’t do it anymore 😢 There really isn’t anyone to talk to about it and it’s heart breaking.
    I’ve always been a fighter but I have no control over this at all it’s really scary 😢

    Liked by 1 person

    1. Thanks for reading and for commenting! ❤️ it really is scary sometimes, and yes the pain is terrible. Sorry about your business but I promise you will find something that you love even more you just can’t lose that hope. You’ll get there , we all will 🙌🏻💕

      Like

  5. Thank you for your thoughts. I’ve been diagnosed with RA for 5 years. My experience has been that not all relationships survive a rheumatoid arthritis diagnosis. Even if you come to a point that the disease is well managed, some friendships cannot be rekindled. Too much time and life have passed by. I call it collateral damage from the disease. The relationships that do survive are stronger and more meaningful, and that is a beautiful thing.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s