You can never really know what it's like. You can describe the pain you go through, but they don't know how bad it is until they have the illness themselves. It makes you sad and angry inside. I became frustrated and very angry. When I'm out with friends and they are running about having fun, I know that I can't join them physically because I'm just too tired. Some days can be worse than others. I can wake up full of energy, but lose it just as easily, and just can't be bothered to even move on other days. You get annoyed with people always saying you're putting it on—all the tiredness and people treating you differently because of your illness—when all you want is to be treated like everyone else. Having this illness makes doing things I love like swimming, running or being out with friends harder, so you have to do your best and hope it's good enough. We are the ones stuck with the illness—we had no choice, but we just struggle on and enjoy each day as it comes.
Arthritis does not restrict the freedom of the young person's mind. We young people don't want to be treated any differently to those young people who are more fortunate. Living with juvenile arthritis is not easy. I try to get involved with as many things as possible so not to get left out of things. Being at school with arthritis is quite daunting but you have to go on as normal. Arthritis does not get in the way of a good education. Having arthritis means I have restricted movements and find it hard to get around school, especially with lots of students pushing and shoving trying to get out of one door. Having friends around, you feel more safe, friends also help to take your mind off things. I would like to be more independent and sometimes friends can be a little too overprotective of you, but it's nice to know they care and will always be there for you when you need them. Living with arthritis is hard but you just have to get on with it.
Physicians and other health professionals should know that suffering from JIA not only involves joints but the whole person: pain, hopelessness and anxiety. Frequently I am the centre of attention—at home, with my parents, as well as at school. However, I feel like a dark horse at the same time. Take, for instance, dancing, inline, basketball or sports at school, where I've got to sit at the side-line because of my illness. This hurts! Swimming and cycling are the remaining choices—but they aren't cool any more are they? My first boyfriend, my first love, left me because of JIA, too. He wouldn't accept that I have to be an inpatient at a special clinic for several weeks each year.
Anxiety is always a big point. Fears concerning my personal future. Will I get a healthy baby even though I took all that medicine for years, for instance? Or will I end up sitting in a wheelchair? Numerous treatment options have been started and stopped. But nobody has answered my question—what will the final outcome be?
When I feel like a roller coaster, I am glad about the constant support from my parents as well as from my girlfriends. That there is somebody to lean on and to be comforted. Hopefully, other young people with peers will experience this in the same way. Health professionals should not only be able to listen. Apart from medical expertise it is important to maintain a holistic review. This is nicely put in a verse: "What could be more important than knowledge? asked the brain. "Feelings and intuition" answered the heart.
Katherina, 15 years (Germany)
I think the doctors should know that not everyone knows the long medical words. I also think doctors shouldn't be afraid to tell kids exactly what's wrong. I think doctors should know that we are still normal people.
Doctors and health professionals should know that you don't like jokes about your height every time you see them! They should know that in their examinations if they say "move your leg" and "does this hurt?" it definitely will if you have arthritis.
Doctors should know that it is difficult being a teenager and then having an illness just tops it up. People (most) always degrade teenagers, which I feel they should not do. Teenagers are not children and they know what is what. I do feel that the majority of teenagers do take things to extremes, meaning they make mountains out of molehills, though, when it comes down to treatment, patients try to work with doctors to decide a suitable way.
Most doctors may know that first year of being diagnosed is the hardest, it is difficult for everything to sink in, the hospital visits, etc. Talking and having a close bonding relationship should be achieved by both the doctor and patient. Talking things over is always best.
Doctors should know that it's hard to have the disease in everyday life because you are different from other children. So if you get supported enough you can get through it and feel normal again.
They should know our feelings: frustrated, angry, sad, tired, aching, fed-up, upset.
The main factor is the opinion of "being different." Although everyone is different in some way, in my opinion this is the major factor that results from suffering with arthritis during the growing up years. It can come as a shock to someone to be diagnosed with arthritis in these years, especially if they have previously been fit and active. The unpredictable nature of arthritis is somewhat difficult to overcome and, indeed, explain to others. This means tasks that are easy on some days, become mammoth tasks the next and is an important aspect that needs to be understood by all people, especially health professionals.
I like a doctor who shows understanding and patience for the trial a young arthritic has to endure, appreciating the intense pain and disruption of life that comes with the disease.
I think health professionals should know what illness the young person has had and listen to what the patient has to say and how they feel, besides just talking to the patient. The best way to cope and help yourself on a daily basis and try not to get too down hearted and feeling that medication is not helping you.
My parents prolonged my recovery time. Every time I have a flare I now try not to tell them because they do my head in! When they do eventually find out, I either get treated like a four-year-old or an elderly person—they wrap me up in cotton wool.
Doctors could improve this situation by talking directly to us and involving us in our treatment and by allowing us to make decisions for ourselves.
I am 16 years old and have had arthritis since I was 14. The pain of my arthritis sometimes restricts me from doing things. My joints swell and I have difficulty in moving. The pain hurts so much that sometimes I have to be carried upstairs.
As a 16-year-old my parents do help me sometimes, but at times parents get very over protective and don't really know they are doing it. When I have flare-ups I sometimes tell them and sometimes not because they tell me to stay in the house, and I really don't want to. Just because I have arthritis, it does not stop me from having a social life.
Doctors sometimes treat you as a child—like the way doctors talk to your parents and not you—but I feel we need to be treated as adults. Since the age of 15, I have been going to clinic on my own so doctors have no choice but to speak to me.
Living with juvenile arthritis is very hard because some people don't understand that you're still the same person as you were, it's just that sometimes you struggle to get around. You also get people saying that they totally understand because they have it too, but what they do not understand is that it's not the same as they are a lot older than you are and it's a different type of arthritis to theirs.
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