As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.
Meet Eileen Schneider, who is a registered nurse and has a passion for patient advocacy. Following, in her own words, is her story about living withrheumatoid arthritis (RA)and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.
Question: How do some of the RA statistics you read about affect you?
Eileen:They’re a reminder to me that this disease affects many people in many ways. Over the years, I’ve learned that a person doesn’t “just have RA,” because the disease affects other parts of the body, too. The numbers reinforce that RA is more than a physical disease and can also affect behavioral health. RA is difficult to cope with, and as the statistics reveal,depression is particularly common.
I seem to be an outlier when it comes to theimpact RA can have on work. I have maintained full-time employment since I was diagnosed and have never had to call in sick because of my RA. I’ve had some surgeries on my joints, but even then, I was able to return to work promptly while recovering. There have been days when I haven’t felt well, but I’ve learned that keeping myself busy has been a helpful coping strategy.
Thecost burdens和风湿性关节炎一起生活是真实的我有不错的医疗保险，但处方、医疗费和化验费用都很昂贵。因为手部和手腕的手术，我的经济非常困难，花了很长一段时间才能付清自付费用。福利非常好，但财务压力增加了压力。
Question: What changes has your arthritis made to the way you live?
Eileen:There have been significant changes. One of the biggest challenges was accepting that I could no longer be as independent as before. I grew up taking care of myself and figuring things out on my own. When I was diagnosed at age 27, I wasn’t ready to give up that independence. Over time, I realized I no longer had a choice and had to ask for help if I needed it. That was a tough transition.
One of the biggest changes I had to make was in my line of work. I was in the prime of my nursing career when diagnosed. My rheumatologist told me that bedside nursing care would no longer be possible. I knew he was right, but it made me so sad. I could no longer open syringes, help turn a patient over, safely help someone walk who was weak. So I became a nurse educator and have worked in the same hospital for 35 years in a variety of nurse-related roles. RA has made me a better nurse because I have greater understanding of those with chronic conditions.
Question: What advice would you give to a newly-diagnosed patient or parent/caregiver?
Eileen:对自己有耐心。这需要一段时间才能适应。随着时间的推移，你将找到与RA共存但不让它消耗你之间的平衡。有时我几乎不去想它;其他日子我想了很多，感觉很沮丧。我学会了关注我的身体告诉我什么。我了解到，当我感到沮丧时，往往是因为疲劳。My body is telling me toslow down，多休息。寻求帮助，倾听你的身体。平衡是关键。
Question: What are the questions we can’t answer yet, but you would like researchers to focus on?
Eileen:When I was first diagnosed, I asked my rheumatologist why I got RA. I didn’t know anyone who had it, including family members. He said there is likely a genetic predisposition to RA and that a stressor may trigger it. Is there genetic testing that can be done? What types of stressors may trigger it? If other family members have the same genetic predisposition, why did I get it and others did not? Knowing those answers won’t change anything for me, but others may benefit as more research is done into those aspects.
Related Resources:
- More Arthritis Facts
- Arthritis & Depression
- Rheumatoid Arthritis in the Workplace
- Arthritis & Emotions