One of the disadvantages I face as an advocate for people who have pain and / or arthritis is the lack of awareness of how destructive the conditions that I treat can be. When I think of the “typical” case that I see in the office, if there is such a person, what comes to mind is a vibrant, bright, accomplished young woman whose life has been turned upside down. But if you ask the “average” person on the street (again, if there is such a creature) what their impression of an arthritis patient is it’s likely that they’ll mention an older person with bony swelling of their hands.
I’m not saying that we should feel that one of these people is more important than the other. My concern is that the resources that government and insurance companies devote to arthritis care and research lag far behind what other conditions receive, even though the numbers clearly show that pain, osteoporosis and arthritis cause the lion’s share of loss of work, disability claims, and disruption of family life. The people in charge of deciding how the money will be spent are influenced by public perceptions, and for some reason a significant proportion of the public thinks of arthritis as a minor inconvenience of the elderly; something that you have to live with if you’ve been lucky enough to survive for this long.
This fallacy proves to be a burden when I first make a diagnosis of lupus or RA in a young woman. Although everyone’s aware that cancer can hit at any age, many of these young people react with shock because they don’t know much about immune disease. They feel that they’re not old enough to have arthritis. They feel horrible; all of them know a relative who has mild hand osteoarthritis, and they know that they’re much worse off than Auntie Mame is. Then they remember a neighbor who’s confined to moving about using a walker, and now they’re in full panic mode.
This is not healthy. One of the first problems I encounter with these patients is that they may be reluctant to believe their diagnosis is accurate, which will lead to them not adhering to prescribed treatment. This phase is soon followed by a wave of negativity, because they associate their diagnosis with advancing age and decreased mobility. To make matters even worse, I tell them that their treatment will suppress their immune system, that this medicine may make it impossible for them to bear children (while they’re on it), that they may lose hair and be nauseated… By the end of my first talk it’s not unusual for me to note that anxiety has surpassed pain and fatigue as the problem I need to deal with most urgently.
I spend the bulk of my time at our first visit on education. I inject a significant dose of hope. I make it clear that all of the office staff is available at any time to help. A follow-up appointment, preferably soon, is made. All patients with Internet access are given the ability to access the office by e mail. A second opinion is always available, although remarkably few people use this resource. Most of the time I get through. There are always people who go the route of denial, either by resorting to “natural” healers or turning to therapy outside the mainstream.
I have a healthy distrust of all media, but I’m convinced that this is a battle we won’t win without massive doses of attention. Cancer awareness received a huge boost from the Lance Armstrong story. Even if its ending has been messy, tens of millions of people now know that you can be at death’s doorstep and recover to the extent that you become an elite athlete and a symbol of hope for all of humanity. This is the main purpose behind this blog: to have the “healthy” world become acquainted with the many beautiful, courageous people that rheumatologists treat. To show that most of our patients do very well; that there is good help available; that life does not end when “our” illnesses are diagnosed.
Please share this with all of your friends and e contacts. You may change a life.
This Post Has 3 Comments
This is so true, until diagnosed with arthritis I too thought it was only something older people got. When I tell people I have arthritis, the common response I get is, “your to young to have arthritis” – for a while I quit telling people, now I try not to take their ignorance personally and educate them.
Thank you Dr. Garriga for taking the time to educate your patients and giving us resources for support and education.
Thank you for this blog! I have MCTD and on the outside I look healthy but you know what the inside looks like. I enjoyed life, had a great job working in the OR, that I loved a lot and had to give up. I was always doing something but now if I do something twice a month I’m lucky. I was diagnosed at 37, I’m now 43. As for as government I’ve been denied twice already for ssi. Great huh. I’ve worked and paid into ssi since I was 15 years old. sad nation we live in.
Thanks for writing this blog. I had to share it on Facebook because I believe it hits the nail on the head. I don’t think people know what can turn a life upside-down until something happens to them on a personal level. God forbid it should have to be that way. It reminds me of a bumper sticker, “If the people will lead, the leaders will follow.” Obviously, we aren’t leading so thanks for the wake-up call and your insight. As you said, “Please share this with all of your friends and e contacts. You may change a life.” Maybe we can even take it beyond that to change countless lives.