When someone with rheumatoid arthritis is surrounded by people determined to live above the illness, an interesting thing happens.
The person embraces this challenge. Connects more. Smiles more. Reaches for newer paths. Holds their care circle—family, friends, treatment team—tighter. Maybe even shares what they’ve learned with others taking their first steps along this journey.
The RA Guy Foundation strengthens these circles of support. And that makes all the difference in the world.
Chronic illness, pain, and depression have a tendency to rewrite our personal identities, quite often against our will.
Sometimes this redefining takes place on our external surfaces, where others can see: a small limp in our left leg, which is compensating for an inflamed knee, or a new cane or set of crutches. Yes, the mind knows that using these mobility devices is in a person’s best interest, but the heart still can’t get over the new stares that one receives while walking through the store, or to the still-foreign reflection in the mirror.
Other times this shift in identity is caused by lumps of hair that start to waft around like dandelion tufts in the wind, a result of the medicines that we sometimes take in an attempt to find something–anything–that might slow the progression of our disease. “Don’t be so vain,” some people (including myself) might say, as the tears start to fall at an even faster clip than the hair from my head. “Why does this bother me so much,” I ask out loud–“I have shaved my head on multiple occasions, and loved how I look.”
And then I it comes to me. What’s bothering me is that this change in my physical identity is being done against my will. It doesn’t feel like a choice; it feels like a heavy imposition.
The biggest changes, however, usually come deep down inside where no one can see, other than ourselves. (Sure, other can see our change in persona, and can see how the chronic pain seems to be eating away at us, inside and out…and we often ask ourselves, in desperation, why can no one see what this is doing to me? Though if we are honest, we would have to admit that there are times when it is way too scary to look at ourselves, even though we’re the ones living with this…)
And as with many other things, the harder we refuse to allow it to change us, the more it eventually does.
Two years ago, when I reached rock bottom, I felt like no one, like nothing. I no longer knew who I was; I had no idea what the future (or what the rest of the day, for that matter) had in store for me. I started feeling like a ghost walking amongst others in the crowd–my presence was still slightly detectable, but I wasn’t really there. The pain, the immobility, and the vision loss continued to smother me, and my reality was no longer an issue of low self-esteem. It was a matter of no self-esteem.
I have since learned, though, that this bleak experience was actually a wonderful opportunity in disguise. Yes, my pain and disability had taken away so much of my sense of self, that I was now operating with a blank canvas…but as any artist will tell you, a blank canvas is meant to be filled. The beautiful thing is that this time around, I was able to re-build myself, and re-define myself, exactly as I wanted. Instead of spending precious energy on the Sisyphean task of trying to make my rheumatoid arthritis go away, as I so often did over the past decade, I was able to paint it’s presence into my landscape, and to see the happiness, and self-awareness, that it has bought into my life.
I now wake up every day, knowing I have become exactly who I’ve always wanted to be. I look back at the journey that bought me to the present, and I know it wasn’t easy; I also look into the future, and know that major challenges will inevitably continue to appear on my path. But I am okay with that, because I now know who I am.
Thanks to my chronic illness, I finally know who I am.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Two years ago today, I was in the midst of an extended stay in New York City. (Even though I am a U.S. citizen, I’ve been residing in South America for the past 10+ years.) The reason for my visit: to go to the Hospital for Special Surgery in the hopes of receiving a new treatment for my rheumatoid arthritis, which had spun out of control and which was no longer responding to the pharmaceutical treatment options that were available down here where I live.
I have since opened up about some of the many challenges that I faced during this period, when I reached rock bottom. What I haven’t spoken much about are the details of what actually took place, when I walked into this hospital looking for something — anything — that might be able to help me.
My primary reasons for not sharing my story were twofold.
First, I was so shocked and hurt by what happened that immediately upon returning home, I scheduled numerous sessions with my psychologist in order to work through the emotional pain of what took place. I knew that I’d probably reach a point when I would be ready to publicly talk about what happened, but that until I then I didn’t want to write words that might seem to come from a place of anger. (My rheumatologist, who has been treating me for years, actually started trembling when I updated him on some of the things that had taken place — that is how upset he was!)
Second, I met many professional and caring individuals within this healthcare center — nurses, lab technicians, and support group coordinators, that I didn’t want to paint the entire institution with one broad brushstroke. As is the case with most organizations, one will find good, caring people and one will find, well, let’s just say…the exact opposite.
I’ve reached that point, though, where I am ready to share.
I share my story because I think that by doing so, I will finally be able to gain some closure on what ended up being one of the worst experiences of my life. I share, because I hope that these words might be able to provide some support and encouragement to individuals who currently find themselves, or who might one day find themselves, in a similar situation. I share, because a reporter from a major international newspaper recently encouraged me to talk more about some of the challenges that I’ve faced while trying to receive healthcare. And I share, because just a couple of hours ago I received an email from the Hospital for Special Surgery, asking me to share my story. (I really did! Okay so it wasn’t a personal message directed specifically to me, but it was an announcement about the hospital’s newest PR campaign titled — you guessed it — “Share Your Story.”)
So, here’s my story of being “treated” for rheumatoid arthritis at the Hospital for Special Surgery in New York City:
Upon seeing me for the first time, the very first thing Dr. C. Ronald Mackenzie (former chair of the American College of Rheumatology ethics committee, and current ethics chair of the Hospital for Special Surgery) did was ask: how does social security disability work, and why are you applying for this program? As far as he could tell, he opined, I was a perfectly healthy young man. (Never mind that he had never even met me in person up until a minute or two before, and also had not yet had a chance to look at any of my medical records. As far as my extreme difficulty with any type of movement, as well as my forearm crutches, well…I’m not exactly sure what he thought those were a sign of.)
The next thing Dr. Mackenzie did was glance through the medical notes that the other doctor in the room, Dr. Reena Khianey, had just spent the previous hour jotting down. Dr. Mackenzie pulled out a pen and immediately started crossing out item after item on the list of diagnostic tests, labs, and radiography exams that Dr. Khianey had prepared. We have to look at his knees and at his eyes, Dr Khianey protested — those are the patient’s biggest areas of complaint! We are not going to look at his knees and his eyes, Dr. Mackenzie replied — I already know that they are not going to show us anything.
On a follow-up visit, I was informed by Dr. Mackenzie that due to my personal financial situation, he would *not* prescribe me any of the newer biologic treatments, even if he did determine that I was (medically-speaking) a candidate for such treatment options. When I told him that it was his responsibility to prescribe medications, and that it was my responsibility to find a way to pay for them — that I even had a letter from the hospital’s financial assistance office describing some of the prescription assistance plans that I might be eligible for, he replied that I was misinformed.
He went on to say this was clearly a case of my subjective analysis versus his objective evidence, and as far as he was concerned, I showed no indicators of having rheumatoid arthritis. When a friend who accompanied me on this visit asked if my high prednisone use might not be masking some of the symptoms of the disease, Dr. Mackenzie responded by standing up and walking out on the both of us — made all the more awkward by the fact that we were in his office!
On subsequent visits, when I was displaying very obvious (and serious) symptoms of corticosteroid withdrawal, I was asked if I was on any illegal drugs.
For months, the hospital’s accounting department kept sending me bills in the amount of tens of thousands of dollars, even though I had a letter from the very same hospital’s financial assistance office detailing what my reduced co-payments were to be, and even though a physical copy of this financial assistance letter was provided to each and every department that I dealt with; this error was corrected only after my account was eventually sent to a collections company.
One day, I received a text message from one of the doctors assigned to my case, telling me that it might be best if I went somewhere else for treatment.
And this, in a nutshell, was what happened during those three months that I spent in New York City.
In the end, however, I learned a *very* important lesson: hope is not always something that can be found by taking certain medications, nor is it always something that can be found from healthcare professionals or healthcare institutions (even supposed “top ranked” ones)…and don’t get me wrong, I’m not anti-med, and I’m not anti-doctor. I know that a lot of people benefit from many different medications, and I know that there are more good healthcare professionals then there are not. I’m just trying to make the following point: hope is something that resides within each and every one of us, and the sooner we realize this, and the sooner we start to tap into the hope that is inside of us, the sooner we’ll be able to overcome any — and all obstacles — that are placed in our paths.
I could look at my experience with the Hospital for Special Surgery, and use it as a reason to harbor feelings of anger and sadness, I could have used it as a reason to give up (which I darn well came very close to doing)…or I could look at my experience, and see it for what I was ultimately able to turn it into: an impetus to OWN my health, and an opportunity to realize that no matter how challenging things might get, it is always within my ability to stand back up, and it is always within my ability to keep moving forward.
There will *always* be doors that close on us — an uncooperative doctor, a difficult financial situation, or a disease that is not responding to treatment — but as the saying goes, when one doors closes, we just have to find a way to open another one. I didn’t find the answers that I was looking for, but I did the find the answers that I needed. And for that, I am grateful.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Quite often the smallest gestures make the biggest differences, especially while living with inflammatory arthritis. Join us for the first ever Hope Care Package Exchange, and help make a positive difference in someone else’s life, while someone else works to make a positive difference in your life.
How Does This Work?
If you are interested in joining this Hope Care Package Exchange, sign up below before Thursday, April 30, 2015.
During the first week of May, you will receive a message with the name and email address of the person to whom you will be sending a Hope Care Package. Contact your Hope Care Package recipient directly in order to get their mailing address. While you’re at it, feel free to share a little bit about yourself, and about how you LIVE with inflammatory arthritis.
Now, all you have to do is start putting together your Hope Care Package! All Hope Care Packages should be exchanged by Tuesday, June 30, 2015.
What Should Be Included In Hope Care Packages?
Be creative, and think about things that have made a positive difference in your life, and what you think might make a positive difference in someone else’s life. This may include, but not be limited, to:
Arts and Crafts: knitted scarves, gloves, or hats, small crochet or quilted projects, poured candles, etc.
Creative Works: framed photograph, homemade books, drawing and paintings, etc.
Small Gifts: bodycare and relaxation products, jar openers and other assistive devices, a book that has really helped you, a mug and some tea from your corner of the world, etc.
Please expect to spend around $20-25 US Dollars on your Hope Care Package.
Yes. Please remember that this Hope Care Package Exchange is based on trust and is only for those who are serious about participating and following through. Rheumatoid Arthritis Guy assumes no responsibility for people who sign up but do not follow through on their commitment to send a Hope Care Package.
Oh, and the personal information that you provide below will *only* be shared with the people you will be sending to/receiving from. Your name and email address will otherwise be kept private, and will NOT be shared with any other person, organization, or company.
[Sign up has closed.]
Update May 1, 2015: Thanks to everyone who signed up! In the coming days, you will receive an message with the name and email address of the person to whom you are sending a care package — please stay tuned!
I shaved my head, in order to more fully enjoy the last few weeks of warm weather (don’t forget, I’m in the southern hemisphere). I welcomed the arrival of autumn. I walked across bridges. I walked through crowded city streets. I walked down barren river canyons. I walked past fields full of sweet-smelling wild flowers. I broke in a new pair of hiking boots. I broke in a new pair of custom orthotic inserts. I re-familiarized myself with South American wine. I cooked. A lot. I organized my favorite recipes. I made chicken korma from scratch, all the way down to the garam masala. I further reduced my consumption of processed foods and refined sugars. I read. And read. And read some more. I saw (most) of the Oscar-nominated movies. I started to explore Jazz music. I incorporated weight lifting into my exercise routine. I started using the steam sauna at the gym. I lost even more weight (my current belt is down to its last notch). I traveled to a volcano on the border with Chile. I visited ancient Andean burial monuments. I got caught outdoors in a sudden blizzard with complete white-out conditions (both fun and scary). I pushed myself to keep moving on the days when my RA activity was low. I stayed in bed and allowed my body to rest on the days when my RA activity was medium-high. I said farewell to my dear dog Alva. I spent a lot of time playing with my two pugs, Oliver and Bella. I barbecued for family and friends. I upgraded to an iPhone 6 Plus (primarily for the camera). I sat down at a coffee shop, and didn’t immediately start checking all of my social media accounts. I bumped into my rheumatologist at the local farmers market. I started planning for an upcoming family reunion. I got lots of rest. I learned more about my mind and my body. I lived life.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!