Real Profiles of Rheumatoid ArthritisPhotos © Lindsey Thies
Norwalk, Connecticut, United States
How long have you lived with RA?
I was diagnosed after 10 years of symptoms at the age of 20. So 19 years total.
What advice would you give to someone who has just been diagnosed with RA?
Be your own advocate and learn all you can. Also don’t let the doctors bully you, you are their boss!
Do you use any mobility aids?
None at this point.
How has living with RA helped to improve your life?
My disease has given me compassion, and that fighting spirit to make my dreams come true no matter what.
Do you have any visible signs of RA?
My hands and feet are a disaster, plus the visible signs of taking prednisone for too long.
Can you please describe some of your favorite coping strategies for living with RA?
Two years after diagnoses I got a puppy and she brought me out of my funk. Also Facebook support groups really helped me. Also don’t be to proud to seek professional help when you need it, when I started college I had a hard time coping with all the new responsibilities and RA.
Can you please describe your current medical (traditional and alternative) treatments?
Well I have been trying to get pregnant for 2 years now, so I can only take prednisone and plaquenil. I really have to work on reducing my stress which always benefits my RA.
Is there anything else about yourself that you would like to share?
My dream was to get my college education and have a great job. I started college 4 years after being diagnosed with RA. I am currently about to graduate and have a job working as a product developer for Pepperidge farms. Also while in college I studied abroad in Guangzhou, China for 6 months, by myself!! The point is I thought my life was over when I got my diagnoses and it turns out it had just begun!!
“There is heat here, but I am not hot. There is hunger here, but I am not hungry. There is irritation here, but I am not irritated.” —Munindra-ji
“There is sickness here, but I am not sick.” —Toni Bernhard
As we finish reading the section of the book titled Accepting Pain, we are introduced to three different practices: weather practice, broken-glass practice, and sky-gazing practice.
Weather Practice: “Recognize that these physical symptoms are as unpredictable as the weather and could change at any moment. The wind blew the discomfort in and it may blow out at any moment. If a new medical problem develops (like an injury), recall that no forecast of the future could have been certain no matter how many precautions you took.”
Broken-glass Practice: “Penetrating the truth of these things, [we see] that this glass is already broken…He saw the broken glass within the unbroken one. Whenever you use this glass, you should reflect that it’s already broken. Whenever its time is up, it will break. Use the glass, look after it, until the day it slips out of your hand and shatters. No problem. Why not? Because you saw its brokenness before it broke!”
Sky-Gazing Practice: “Try sky-gazing. If you’re in bed, try virtual sky-gazing by closing your eyes and shifting your focus from the unpleasant physical symptoms to a more spacious and open experience of body and mind as part of the energy flow of the universe.”
We close with a discussion of no-fixed-self, or anatta, and talk about the fact that what happens in life arises out of conditions; what happens in life is often not within the control of the self-identity that we refer to as “me.”
- Grab bag: Which of the three practices–weather practice, broken-glass practice, and sky-gazing practice–resonate most with you? Have any of these practices allowed you to discover something new about yourself?
- Who are you? Shedding fixed identities, such as “I am sick,” opens possibilities for seeing the world with new eyes. Do you carry around any such fixed identities, such as ‘chronic patient,’ ‘sick mother,’ etc.?
This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.
A few years ago, back before I even started blogging as Rheumatoid Arthritis Guy, I reached my lowest point in my battle against depression and suicidal thoughts. It was quite difficult to re-visit this period of my life, so much so that I only opened up about it recently, when I wrote a blog post a few months ago that was titled Don’t Lose Hope.
It wasn’t necessarily a feeling of shame that previously kept me from discussing this topic. Instead, it was just the fact that I still had many unhealed wounds; wounds that were received from such raw (and almost unimaginable) emotional and physical pain.
I’m glad I finally opened up about my previous struggles, though. Not only has it helped me reach a point where I feel more healed than damaged, but I’ve also received more private messages that you can imagine, from others who currently find themselves in the same spot where I was a few years ago. Many people have told me that they specifically decided not to commit suicide, after reading the blog post mentioned above. I know exactly what it’s like to be in the shoes of the person on the other side of the email, and reading words such as there always moves me to tears.
Yes, there is a lot of sadness in these tears that I shed, but there is also a lot of happiness. Happiness in the knowledge that by having shared some of my deepest struggles, I’ve been able to help others who currently feel like they’re losing the battle against depression.
An interesting thing happened, when I finally decided that I needed to reach out to others for help and share what was going on in my head. I made an appointment with a psychologist, and before my first session I tried to figure out what I was going to say. Of course, the main issues that I was dealing with were obvious…but I needed to figure out how to get across all of the ‘background’: I needed to explain what rheumatoid arthritis was, I needed to describe how I was struggling with so many side-effects from all of the medicines, and I needed to relate some of the problems that I had encountered when dealing with previous rheumatologists.
So there I was during my first session, going through my mental list of things that I needed to say. Rheumatoid arthritis. Check. Methotrexate. Check. Losing two days a week to my prescription hangover. Check. Problems with Dr. X. Check. Problems with Dr. Y. Check. And so on, and so on. And as I continued to talk, I started to notice that every piece of information that I communicated was being received with a gentle nod. Did this psychologist across the room really understand everything that I was talking about, or were these just kind signals of acknowledgment?
I received an answer to my question towards the end of the hour. As luck (or fate, or whatever you want to call it) would have it, my new psychologist was the primary caregiver of a person who was living with rheumatoid arthritis. Talk about a wealth of information: in addition to all of my emotional issues, we started discussing a wide range of different treatment options that I might try. (And much to my ‘surprise’, I also learned that we both had the exact same problems with Dr. X!) And this, in a little more detail, was how I was finally able to change directions, and start along a path that has helped me reach the point where I am at this moment.
I share this additional information because I continue to receive all different types of messages from readers of this blog, and in these emails I’ve noticed that there are two questions which are asked much more frequently than others:
- How can you possibly be so positive while living with rheumatoid arthritis? I want to get to the point where you’re at, but I just don’t know how to.
- How do you keep moving forward? I can’t do this anymore. I just want to give up.
And while my goal in writing this particular post is not to provide complete answers to these questions, I do–as the eternal optimist–want to point out what I see to be the positive aspects of these questions; questions which obviously communicate that the people writing them are facing significant challenges.
To people in the first group, I just want to reiterate that I haven’t always been in the positive place where I currently am, but that I too had this hope, this idea, that things could and should be better than I once found them to be. To even be able to grasp such a thought is a recognition of the power and of the strength that resides within you. This thought, and this recognition, will continue to point you in the right direction, and take you down the right path. Right now the specifics may not be clear (how am I going to get there, when am I going to get there), but you do have a clear goal in mind: the desire to live a more happy, fulfilling, and positive life with chronic pain and disability. It may take a while to really start noticing some of the positive results (it certainly did for me), but I have no doubt that you will in fact achieve your goal.
And to people in the second group, you might be wondering how I can possibly find anything positive in your question. It’s actually quite simple, though. Whether you realize it or not, you’ve *already* reached out for help…and this is a good thing! The exact minute when I realized that I needed help will always be one of the most important moments in my life. Even though I didn’t see it at the time, it was at this point when I decided to stop suffering, and finally start living. I don’t know how many other people you may have already reached out to for help, but that’s exactly what I suggest to continue to do. Choose which friends and family members you can speak to about what’s going on, and talk with them. Trust me, it helps a lot. I know, it’s hard in the beginning…but with each new person that you reach out to, it get’s easier…and things get better. And don’t forget, working with a trained therapist or psychologist–like I did–can really make a world of a difference.
Sometimes it’s harder than usual to find that silver lining…but it’s always there. We just have to look for it.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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