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

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.

2. ‘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.

3. ‘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.

4. ‘”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.

5. ‘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.

6. ‘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 ‘.

7. ‘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.

8. ‘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.

9. ‘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.

10. ‘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.

11. ‘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.