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

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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.

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Chronic Illness, Mental Health & Me

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When you are diagnosed with a chronic illness everyone worries about your physical well being, if you are taking your medicine and how your pain levels are, are your bloods ok, how is your liver doing? You do hours and hours of tests every year to make sure your body is still somewhat functioning, at least enough to keep you alive and yet not one medical practitioner ever asks ……how is your mental health?

Don’t get me wrong I know they already have so much on their plate and their main focus is your physical health but from the time I was 15 to now almost 10 years later no one has inquired about my mental health.

The pain, the idea that your body is deteriorating and is not ever going to get better is a lot to handle at any age. But the worries, the fears, the sense of loneliness , the stigma  all of this combined takes a toll on your mental health.

I have only in the past couple of years learned that the emotional rollercoaster that I am on with regards to my Rheumatoid arthritis is normal. I have learnt that, from meeting with and talking to a variety of others with the same or similar conditions.

I often wondered if I was exaggerating all the side effects of this illness. I wondered should I really ‘miss’ an old version of myself? Is that just feeling sorry for myself? Was I allowed to feel sorry for myself? Was I too sensitive when someone implied I was lazy? And how was I supposed to feel when someone blamed my diet on my illness? These were not questions I was willing to ask my doctor or my nurse.

For the most part I just ‘got on with it’ but there would be days where I would convince myself that I was entirely useless as a human being. That I was a waste of energy and resources on my friends and family. I mean what kind of 16 year old girl can’t dress herself? No one told me these were thoughts that most people with a life long illness experience at some point or another. But then again I didn’t ask. I didn’t ask because that would make me a ‘moaner’ and that was the last thing I wanted to be on top of lazy and useless.

Then there would be times where I would feel a rush of anger towards someone’s ignorance. They said the wrong thing or just stood there in almost disbelief that I a teenage girl could have arthritis.

I worried about my future. I wanted a career, a high flying career. Suddenly I didn’t know if that would be possible. Sometimes I doubted my ability to get through school never mind college and then pursuing a career. I was terrified that I was to become a house wife but with no husband or children. I was so unsure of what the future held it was worse than any horror film for me.

These were all things my mind did each and every day, question why me? Or wonder if I had caused it? Wondered if I had done something to deserve it? Wanted to tell someone how frustrating it all was! How angry it made me feel when no one understood and how devastating it was when people just thought I was lazy.

My mind came up with new questions each day, new things to worry about. To be honest the mental toll is often worse than the physical one. The pain wouldn’t be so bad if we could accept our limitations, or people understood or if it didn’t make us feel as though we are a shell of the person we were before. If we could better deal with the emotional side effects of a chronic illness the physical ones would be much easier to get a handle on.

Mental Health no matter how physically healthy you are is vital and the world is beginning to see that. It is slow but it is progressing. Having a chronic illness is not the same as having anxiety or depression but it allows you to develop those conditions too. You have to look after your mental well being no matter who you are or what you have or don’t have in life.

I find writing has helped me leaps and bounds, not only does it allow me to get everything off my chest but as I publish it to the public it allows me to connect with others who say “Me too!”. If writing is not your thing a chat with a friend can do the world of good. You just have to be brave and tell them how you are REALLY feeling.

You learn so many coping mechanisms as the years go on. Little ways to make your life easier, but you also learn how to deal with those thoughts a little better. You learn that it is ok to not always be ok. That crying can relieve some of the frustration and that feeling hurt when someone implies you are less than you were is more than justified. That grieving the old you is normal and even healthy and that from time to time you will feel a little useless.

If you accept these feeling and actually DEAL with them you will be all the better off for it. Your feeling are not invalid, they are never invalid. So right now this minute…take a moment or two to write it all down, or talk it all out or go and scream into a pillow. Whatever works for you…but don’t hide from your emotions you can’t hide from your illness and you certainly shouldn’t hide from your feelings.  You may feel broken but you have the power to be the strongest you have ever been you just have to take it.