"Where there is creativity, there is hope." ~ Donna Karan

The things you should avoid saying to young people living with Arthritis

by - Friday, October 12, 2012

Despite the fact that arthritis is an extremely common condition, there still remains many misconceptions and myths about the painful condition - such as the belief that only old people get arthritis.
The majority of people mean well, and often have good intentions, it's just that they are a little misinformed. But then there are those who come across as downright insensitive and just plain stupid. Their comments are far from helpful and leave those living with the condition feeling rather frustrated.
As a young adult living with Rheumatoid Arthritis, I have heard some pretty silly statements and have answered several stupid questions regarding the disease, and because of this, I sometimes feel as though I am the only young person on the planet who has arthritis. Most people just don't expect young people to have arthritis.
As today is World Arthritis Day, I thought I'd take the opportunity to write about some of these statements that often leave me, and so many other young people living with arthritis, feeling discouraged, unsupported and isolated.
(image from here)
You're too young/ You're not old enough to have arthritis. This is the biggest misunderstanding about arthritis. I wish that people understood that arthritis isn't just an old person's disease. I am tired of seeing disbelief wash over faces and I hate having to explain the how and the why. It would seem many people haven't heard the term 'hereditary'. Arthritis comes in many different forms and attacks people of all ages - it affects kids, too. Nearly two-thirds of people with arthritis are younger than 65 (1).
My grandma has arthritis. This is not a statement that cheers me up, and it doesn't bring me much comfort. It just confirms that people automatically think of their grandparents when they think about the condition, its effects, and consequences. Chances are, the arthritis that your grandma has is different from mine. There are over 100 types of arthritis, and the typical arthritis that presents in old age is osteoarthritis. The arthritis which I live with is an autoimmune condition, and being in my mid 20s, it's obviously not a sign that I'm just getting older. I don't like being compared to your grandmother. Our challenges vary, and the pain affects us differently. I don't suffer from wear and tear, and Rheumatoid Arthritis isn't just plain 'ole arthritis, it's a disease.
Don't you take fish oil? This question frustrates me. Fish oil is not a cure for arthritis, neither is it extremely effective at relieving and treating arthritis symptoms. People just see those fish oil commercials and start making assumptions. It's important to understand the fish oil doesn't help everyone's pain, and in saying that, however, I do take fish oil, and I find that it does help a little- but I need a lot more than just a few fish oils capsules to be able to function normally. To manage the pain of arthritis, control inflammation and improve joint stiffness, I have to take a cocktail of drugs daily and I still have painful days. If only it were as simple as taking fish oil.
You don't look like you have arthritis. Say this and you can guarantee that I'll want to smack you in the face. With a shovel. Asking someone if they are hurting is like asking if it's cold in Antarctica (I can take no credit for that funny, it was on one of those ecards that has been doing the rounds on Facebook). It's evident that there is still a stigma attached to the disease. Often the first thing people do when they hear that I have arthritis is look at my hands. It makes me feel uncomfortable to know that they may be thinking of their grandmother’s twisted-up hands. Just because I don't walk with a limp, or a walking aid, doesn't mean that I don't have arthritis. Just because I don't have deformed and swollen joints doesn't mean that I'm not hurting. Just because my hands appear to be healthy doesn't mean they don't hurt like heck some days, and just because they are not all twisted up doesn't mean that sometimes things can be hard to open or hold. Just because I'm not all hunched over doesn't mean that the pain of arthritis doesn't affect my spine and ribs, making driving and typing a painful task some days. While it's true that there are many people who do have swollen joints, there are also many people like me who don't. Fortunately for me, the disease was caught early and treated properly. I have found a combination of prescription medicines that help manage the pain and control disease progression.
At least you don't have cancer. Says the person who is a picture of perfect health with a degree, working to establish a career. This has got to be one the most insensitive things that you can say. It's a comment that lacks compassion and concern - it denies sympathy for people living with a painful condition. Yes, I am very thankful that I do not have cancer, and I know that my situation could be much, much worse, but that doesn't mean that I'm not really struggling too and need a bit of support. There are many people, including myself, who take strong drugs to treat their autoimmune disease which are similar to those that cancer patients have to take - the only difference is the dosage. These drugs are serious, and although rare, the side effects can be life threatening.These drugs have made me feel even more fatigued, and have exacerbated my Chronic Fatigue Syndrome symptoms.
This shouldn't be happening to you/ You don't deserve this. Well, state the bloomin' obvious, why don't you! No one deserves to have arthritis, except for maybe pedophiles and murderers in prison. These kinds of statements though just aren't helpful, and they don't cheer me up. They denote pity, and I hate having people feel sorry for me. Yes, I need some sympathy, understanding and a shoulder to cry on every now and then, but I can do without the pity. I need positive people in my life who are going to support me and encourage me to focus on the good things in life- not drag me down by dwelling on the unfairness of it all.
(image from here)
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