Dealing with pain and people that doesn’t understand it.

kingarey
kingarey Member Posts: 3
edited 10. Jun 2018, 14:55 in Living with Arthritis archive
Hi everyone. I wanted to start this topic since I haven’t found anything similar.

My name is Kinga, I come from Poland. I was diagnosed with juvenile arthritis 7 years ago, when I was 11. Now doctors say that it’s more ankylosing spondylitis or at least it’s going in that way.

As many of you, if not all, I struggle with pain everyday. The problem with me is that I haven’t found a medicine that helps as much as I wish to. Another problem is people not understand what people with arthritis are going through.

There are days when I can’t stand up from bed or days when I go to school and after a lesson I need to head back home, because I’m not able to sit-the pain in hips, lower spine and knees is huge. Then I take pills and try to lay down till it’s at least better.
Because of such problems I have individual lessons, just a few hours per day - and I still have problems with absence. I have problems with learning, because of the time when I can’t sit or sometimes even hold a book.

Ever since I was diagnosed I had problems with people not understanding why sometimes I write tests later, why I can hand in homework a few days later... it’s always been a huge problem for me. All the kids in class felt like they were treated unfair, like I had some privileges. In secondary school it was better - after school psychologist came to class when I was in hospital and explained them what’s going on, people behaved differently, they understood why sometimes I’m treated not like they are, why I’m absent...
But when I went to high school/collage it didn’t go as good. After the talk with the class they kind of bullied me. It got much worse. I’ve spent the free time between classes with my friends from other classes. That was the only way to survive it all. This year I moved to another school where people accept this fact and even try to support me.

I don’t really understand why people can’t accept the fact, that someone has some “privileges” or “rights” to do something a little bit later because of their condition... if I only had a chance, I’d love to work as hard as they can, devote more time for school rather than wasting it and lying in bed...

I must admit, when I’m feeling better I do everything as others. At least I try to. I have more energy, I smile more often, I’m more “present”. It can be hard to understand.
One classmate once told me that it looks like I’m pretending to be in pain just to get away with not having my homework done or not being prepared... I mean... seriously?
Does any of you have the same problem? How do you, guys, explain your condition to people that they understand it...?


I’ve been on methotrexate (I felt horrible after it so I stopped taking it after about 1-2 years), corticosteroid medicines (I’ve gain more weight because of it and my doctor decided to stop taking it after I started taking enbrel), Enbrel (I took it for 3 years, I had to stop because my country didn’t want to refund it, because my results weren’t as bad as they should be to have it refunded... I couldn’t buy the medicine myself and continue treatment because it’s really expensive here and really hard to get). Now I’m on sulfasalazine and opioid medicines.

I think Enbrel helped me the most, at the beginning of my arthritis I had problems with knees - they were swollen all the time. Enbrel prevented them from swelling. Tomorrow I’m going to my doctor to ask if there is a way to have it refunded again or if I can take something else in this type.

I also wanted to ask everyone that struggle with arthritis - what kind of treatment works the best for you? What kind of treatment, rehabilitation or medicines help you the most? What kind of exercises you do? What is the best way for you to deal with the pain?

Thank you for the time spent to read all of it, I didn’t think it’d be that long! By the way - I’m new to this forum, if there is anyone that wants to share their story or just talk - feel free to contact me [emoji4]

Hope you have a nice day,
Kinga


Sent from my iPhone using Tapatalk

Comments

  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hello Kinga and welcome to the forums on behalf of the moderation team.

    I am so sorry to hear about your Juvenile Arthritis, but especially to hear your Enbrel can’t be funded in Poland.

    I think your problems at school, with some of the other young people is because they are still young. Hopefully they will develop some empathy as they get older, but you have changed schools to a more sympathetic one now which is good.

    It is really excellent to read that in spite of your Arthritis you are continuing your studies. You should give yourself a pat on the back for that. Also that you recognise your illness has given you some positive attributes such as being more ‘present’ and more ready to smile at others. This is a great attitude to have Kinga. :)

    We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can.

    Best wishes,

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Kinga, it's lovely to meet you but I am sorry you have had to find us. I am very tired at the moment (I've had a long day) but it's a very familiar topic on here, friends and family not really 'getting it'. We get it because we've got it. :wink:

    There are two articles on the net, There's a Gorilla in my House and The Spoon Theory, both give good explanations of how difficult it can be living with a chronic condition. People who are not ill as we are ill won't understand the limitations we face on a daily basis, for them being poorly is a temporary thing and naturally they think it's the same for us. They are idiots.

    I must go but I will be back tomorrow, hope to hear from you again soon. DD
  • stickywicket
    stickywicket Member Posts: 26,700
    edited 30. Nov -1, 00:00
    Hello Kinga and welcome from me too. You write very good English to say that it's not your first language. Well done!

    I'm so sorry to learn of your rather horrible school experiences but pleased that your new school seems so much better.

    I started with RA (Rheumatoid Arthritis) when I was 15 though they think it probably started when I was 11 and had what they called Rheumatic Fever at the time. I remember having to lean on my friends – literally – to walk to school as mine started in hands and soon progressed to feet. I had to only go in to school when I had an exam and I had to do preparation writing left-handed to save my right hand for the 'proper' answer. It was tough and there were no real medications back then (1961) to help. However, I managed to get to university and get a degree and I'm sure you will too if that's what you want.

    I think I was lucky in some ways. No-one objected to me having extra time or privileges because I didn't. These things weren't understood very well back then and the most I got was someone to write for me in my final exams.

    It seems so hard that yo should lose the funding for enbrel. I know each country has its own rules about which drugs to accept or reject. All our medication is expensive but I do know that some 'bio-similar' drugs are on the market now ie the original ones are now out of patent so they can be manufactured more cheaply by other companies. The enbrel biosimilar is called 'erelzi'. It might be worth asking your rheumatologist if there's any chance of being prescribed it. I'm sorry, I've no idea how the healthcare system works in Poland.

    Unfortunately, it doesn't really matter much what works for others because we are all different. I take a combination of methotrexate and hydroxychloroquine and they work well for me. Corticosteroids work well for most people but they are not a long term solution as they can damage organs. If you look at the top menu you'll see lots of different sections to read and there is a good leaflet on exercise which is essential for us.

    I'm afraid I must go now but I hope this has been a little help.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Kinga I was bullied through High school and into college like you due to me being different, not doing P.E due to my illness and taking time off school and college. The bullying got so bad I to had to have lessons from home and did most of my college work for lessons at home. I only went in for the exams and then straight home after as someone would be waiting to collect me. The thing is now I'm an adult the same people who bullied me ask after me on Facebook!! And if my Sister see's one of them when she is out they ask how I'm doing which she scoffs back to them 'why ask now when you made her life hell when she was younger!' I'm so sorry you are having to deal with this now, I know what it is like and all I can say is stay strong and get work hard and just think I will get through this. Get the best grades you possibly can. I got C's & D's in high School and a Diploma with Distinction in College! All because I got it in my head the bullies wouldn't beat me!! :wink: t4591
  • stickywicket
    stickywicket Member Posts: 26,700
    edited 30. Nov -1, 00:00
    bubbadog wrote:
    now I'm an adult the same people who bullied me ask after me on Facebook!! And if my Sister see's one of them when she is out they ask how I'm doing which she scoffs back to them 'why ask now when you made her life hell when she was younger!'


    I think most of us get a little wiser as we get older and can be ashamed of our past behaviour when we understand better. So probably, taking their questions as coming from genuine concern might be a better option. Nothing to lose and plenty to gain.

    I'm talking about face to face contact here. Facebook is another matter and one which I'd never deal with.
  • kingarey
    kingarey Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you all for a response!


    Recently I’ve visited my doctor and she said I should take methotrexate again (but not in pills - in injections once a week). Then after a while she can start the procedure to have Enbrel refunded again - it’s pretty complicated here in Poland (I need to be on methotrexate treatment + my blood results need to be on certain level). Is there anybody who didn’t tolerate methotrexate in pills well, but it wasn’t that bad with methotrexate in injections? I’m a little bit worried about that to be honest.


    Sent from my iPhone using Tapatalk
  • stickywicket
    stickywicket Member Posts: 26,700
    edited 30. Nov -1, 00:00
    I take tablet meth but it's very common to give it by injection to those who have problems with it in tablet form. It seems successful in most cases. Good luck!

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