Stuck In The Middle

Recently I have found myself thinking a lot about the arthritis community as a whole. Did you know that we have the potential to be a very large community? In the United States there are 50 million adults and 300,000 children living with some form of arthritis. Those numbers translate to one in five adults and one in 250 kids, which makes it pretty likely that you know more than one person living with arthritis. And while not a single one of us would ever wish arthritis on anybody else, it is nice to have a community of people to support each other who actually understand what it is like to live with arthritis.

The arthritis community is served and supported by arthritis organizations, and I am personally very grateful for everything these organizations do to help us live better with arthritis. Arthritis organizations raise research dollars to fund cutting edge arthritis research that may one day bring relief or lead to a cure for all of us. These organizations also provide resources and support to help people adapt to life with arthritis and thrive in spite of it.

But, while I understand that these organizations are working within limited means, the more I think about it the more I realize that I belong to a demographic of arthritis sufferers who receive less support, recognition, and resources than they ought to.

At one end of the spectrum, arthritis organizations tend to spend a lot of time, energy, and funds focusing on adults living with osteoarthritis (OA). OA is not an autoimmune disease like rheumatoid arthritis (RA), but instead occurs when the material that cushions the joints, called cartilage, breaks down over time. It is the most common form of arthritis, and the type most people picture when they hear the word “arthritis.”

It makes a lot of sense for arthritis organizations to provide resources and support for people living with OA. There are 27 million people in the United States living with OA in at least one joint. By recognizing and supporting this demographic, arthritis organizations can hope to bring the largest number of people into the arthritis community. Having more people involved can only help to promote awareness and improving fundraising efforts, which will eventually help everyone living with arthritis.

However, because OA is a form of arthritis that occurs over time, the majority of people suffering from OA happen to be older adults. While young people can certainly get OA, particularly athletes who use specific joints a lot in their sport, most of the resources provided for OA sufferers are aimed at older adults. These resources do promote physical activity, but they generally encourage low-impact exercises and physical therapy. Pacing and rest are also emphasized; as is the use of assistive devices, such as jar openers, easy-grip utensils, knee braces, and walking canes. Luckily these resources are not only useful to people with OA but can also overlap to provide support for older adults living with RA and other forms of arthritis.

But what about those of us who were diagnosed with arthritis in our 20s or 30s? What about the arthritis sufferers who are still young adults? What if we want to go snowboarding or hiking with our friends? Or travel? Or start a career? Or a family? We don’t want to be told to slow down and join an aqua aerobics class. We don’t want to be told to walk with a cane. We are too young to make much use of the resources provided for people suffering with OA. We need help and support to get our lives started, despite the arthritis we are living with.

On the other end of the spectrum, arthritis organizations tend to spend a lot of time, energy, and funds focusing on children growing up with juvenile arthritis (JA). I can only imagine that having arthritis makes for a very difficult childhood, so I do honestly feel that these children and their families deserve all the love and support they can get. I have met babies who were diagnosed with arthritis as they were learning how to walk. I know a teenager who has already had both of her hips replaced. I think it is so very important for arthritis organizations to provide resources and support for these families. And I also recognize that, realistically, the sad story of a child growing up with arthritis speaks to the heart and can help a great deal with fundraising efforts.

But it seems like the resources provided on this end of the spectrum are aimed primarily at the parents. And the resources that are aimed directly at the kids, to help them maintain a normal childhood, generally appear to end at adolescence. What happens when these kids turn into teenagers? And what happens when the teenagers turn into young adults?

Being a young adult is a difficult enough transition when you are perfectly healthy. It becomes unimaginably more difficult when living with a life-altering diagnosis of arthritis. I personally think that young adults with arthritis deserve more recognition, resources, and support. I realize this may be difficult for arthritis organizations to accomplish without taking limited resources away from other demographics, but young adults need hope too.

We need more stories of people enjoying their college years or finishing grad school while living with arthritis. We need to hear about people who started successful and satisfying careers despite their arthritis. We need more advice about how to talk to our professors and employers about our physical needs, and more information about our legal rights in schools and workplaces. We need more hopeful and uplifting information about how to survive without meds to start a family or breastfeed our babies. We need more resources so that we can connect to and support each other as we travel through the prime of our lives with arthritis.

RheumatoidArthritis.net is a resource that hopefully can help provide some of this information. In my future posts I will share my personal stories of successfully graduating from law school and starting a family with arthritis. You can help by sharing your story too. Hopefully together we can work to provide positive, hopeful, and uplifting resources for those of us who find ourselves in stuck in the middle.