The art of listening

A couple of weeks ago I had the chance to listen to Atul Gawande talk about his last book, Being Mortal, and the ideas and lessons that came out of it. It was a pretty amazing experience listening to someone who has thought so deeply about the medical system, its role and impact on the patient, and the ways in which we could shape the system to ensure it works better for all of us.

While Being Mortal focuses primarily on the aging processes as a continuation of life and explores how we look at aging and end of life care, I found myself thinking that many of the ideas and notions that Dr.Gawande was trying to apply to good care for the elderly and terminally ill were things that I myself was seeking and often found lacking within my own care for multiple complex chronic illnesses. I sat there listening to Dr. Gawande talk about how good geriatric and palliative care is care that allows people to continue to live by their own values, takes into account their life priorities, and provides care that allows them to live in a manner that aligns with these. That perhaps good medicine is not only about providing the best care that we can with every possible intervention, but in fact that it is care that asks the patient about their priorities and desires. Good care enquires of patients what they are willing to do, and even risk, in order to allow them to live as best they can. Care that does not ask the patient to give up these incredibly important and integral parts of themselves but incorporates it.

This idea really struck me because, while I doubt none of us would disagree that medicine should improve quality of life and aid the patient to live their best life, we don’t often stop to think what that means, or whether we are actually receiving that kind of care. I have been thinking more and more lately about the kind of care that I receive and what I really want out of my interactions with the medical system. For a long time I have been feeling unhappy with these interactions, despite the fact that I am receiving some of the best care in the world. Sitting listening to Dr.Gawande I realized that what I really want out of my interactions is for someone to ask me what my priorities are, what my goals are, what I want, and what I am willing to do in order to get there. I want my physicians to stop for a moment and truly listen to my needs; to really try and understand what I was hoping to get out of that medical interaction. To take a step back from their need to educate me, to restrain their need to tell me what they think the right path is, to put aside their worry about my future and how that may or may not be impacted by the treatments that I chose. I want just one of my physicians to understand that my priorities may not align with theirs and realize that it is my choice to chose a different path.

I understand that this is difficult, because while we want to believe that medicine is solely about the patient, we must recognize that like any other relationship there are two sides. Often it is as much about the comforts, beliefs, and even perhaps ego of the doctor, as it is about the needs of the patient. But when physicians are unable to put aside their preconceived notions and ideas and take a step back to understand their patient we are all the poorer for it.

Recently I have been unhappy on one of my arthritis medications. I do not think it is giving me the quality of life that I want. I have had three rather large flare ups since starting this medication just over a year ago, a fact that I am incredibly unhappy with. However, I have also had good periods in between. I have voiced my desire to change medications to more than one physician, and the response has not exactly been what I had hoped for. When I voiced my disappointment with this medication to my pediatric rheumatologist I was met with the response that I expected, but not the one that I desired. Dr.S, instead of asking me about my thoughts and opinions, told me hers. I was educated on how the medication I’m on is a great arthritis med, I was reminded that medication choices and changes are complex, and warned about the risks of moving onto another med. I was reminded that once one switches off of a biologic one often cannot go back to that medication again (and there are unfortunately not that many options out there for many of us, so we don’t want to burn through them). She culminated her mini lecture by informing me that if it were her choice she would stay on the medication for at least another 6 months, because she liked to be conservative about switching people from one medication to another. And what I heard this whole time was my physician’s ideas, my physician’s worries, and my physician’s needs in this relationship. It did not feel like this conversation encompassed my worries, my desires, my hopes, dreams, or needs. My priorities felt like they were contained in the conversation only in the ways in which Dr.S saw them. My priorities existed only in the way she believed that they should be. In essence, my priorities were missing. Nowhere was there a discussion about my needs, as I saw them. There was no appreciation that I had come to this conversation informed, that I had some understanding of the complexities and the risks of switching medications, and that I was willing to switch anyway. There was no thought that this might be my risk to take. As the patient I had come hoping to be listened to, but instead I had become the listener, a situation that seems to occur all too often.

I am not quite sure how to change this. I think it starts with each of us asking a little bit more of our physicians, and of ourselves. While I may not be able to change how my physician interacts with me, I can change the way that I interact with them, and perhaps the rest will follow.

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Disclosure

Something that can be incredibly difficult when you have a chronic illness is disclosure. Its difficult to know when to tell someone about your arthritis, who to tell, and how much. For me I’ve always taken a very open approach to telling those around me about my juvenile arthritis. It’s no secret to those who know me, because I’ve never really seen why it should be. Arthritis is just one part of who I am, it’s not what I am, and as such I have always talked about it to anyone who has wanted to know. However, while I say that I’m very open about it it’s not something that I chose to spread around, or which I necessarily talk about without prompting. This is in part because I don’t want to be that girl, the one whose always complaining about her joints, her pain, her problems. I worry if I talk about it too much people may like me less, but I also don’t want to impose my problems onto others. In a way I want to shield them from all the pain, worry, and uncertainty that comes with having a chronic illness. I’m happy for people to know, but sometimes I worry if they know too much or I talk about it too much they will stop seeing me as just me, but instead see me as their friend with arthritis.

Recently I applied to medical schools and made the hard decision to disclose my juvenile arthritis in my personal statement. I decided to talk about it, because having juvenile arthritis is one of the driving forces behind my decision to go into medicine, and the initial instigator of my interest in medicine as a career. Since my diagnosis my love for medicine has grown and surpassed simply a desire to go into this field because of my own personal experiences, and yet my understanding of who I am and what I want to do would not be the same without the medical experiences that I have had due to my chronic illness. Given this, it seemed impossible to omit this crucial part of myself, and so I disclosed my diagnosis and focused on the ways it has enabled me to grow as a person and prepare myself for a career in medicine. While I do not regret my choice to disclose to medical schools that I have been diagnosed with juvenile arthritis, there is still a little voice in my head that has doubts about it every time I get a rejection letter. I know that these can happen for a number of reasons, not least because the application process is so competitive. But I still can’t help but wonder if disclosing my illness hurt my chances, if it allowed people to wonder about my capability both now and in the future. If instead of showing how much I’ve grown and how far I’ve come due to my chronic illness experiences, it instead showed my weaknesses and devalued my worth. The thing is even if none of this is happening, it highlights the true emotional struggle that comes with disclosure of a chronic illness, because while my fear about the medical school process is not founded in anything in particular, my distrust of how others will interpret my illness experience and see me as a person with a chronic illness is founded on experience. While most everyone I’ve told about my illness has been great, there have been those who have doubted my capability, who have seen me as less than because of my illness. Sometimes I have even had my own self doubts about my worth. So as I move forward I am trying to re-evaluate how much I want to disclose to people, who I want to disclose things to, and when. And it is a very hard thing to do, because while I am not arthritis, arthritis is a part of who I am. It has shaped me, allowed me to grow and mature as a person, and I while I currently have doubts about whether I feel comfortable being as open as I have been, I also feel like hiding this side of me would be a loss, to both myself and others.

Time for a change

Remicade was the first arthritis medication that really worked for me. I mean the others helped somewhat, but they never seemed to make that real difference that I was looking for. With everything else I was slightly better, but nowhere near functional. On Remicade I’ve been able to attend college, and even compete as a college athlete. It has never put me in remission, but it’s brought me really close. I’ve been on Remicade for just over three years. It seems crazy that it’s been so long as I still remember vividly the day that I had my first infusion. But lately Remicade hasn’t been working as well for me. Over those three and a half years I’ve gone from infusions even eight weeks, to every six weeks, and now every four. Yet even going ever 4 weeks I’ve had some pretty big flare ups. That coupled with the inconvenience of having to go into Boston Childrens Hospital so frequently, as well as a number of odd side effects I have (hyperinsulinism being one of them), has led my rheumatologist and I to decide that it’s time for a change.

This week I will be leaving my faithful friend Remicade behind and starting Humira. Its a change that will hopefully be for the best, but as with any major change I’m anxious. Sure Remicade wasn’t working as well for me as it used to, but what if Humira is even less effective? My rheumatologist has reassured me that she thinks Humira will work great for me, after all it’s mechanism of action isn’t that different from Remicade. But still I have this niggling worry that she might be wrong, that I’ll switch to Humira and be worse off. After all Humira doesn’t work for everyone, including people who respond to Remicade. But then again maybe I’m worried over nothing. Maybe Humira will be wonderful. Maybe I’ll even finally go into remission. Maybe… maybe.. maybe. I guess only time will tell.

Giving Thanks

With a chronic illness it’s so easy to focus on all the things that are wrong, the things that are hard and disappointing. It’s easy to let these things take up more space than they are worth. I know I often spend too much time worrying about the newest thing that seems to be wrong, like the return of a facial rash, or a joint that has just swelled up. But this Thanksgiving while I was sitting surrounded by friends and loved ones, I realised how much, both in my personal life and medically, I have to be thankful for.

I am truly thankful for all the amazing doctors and specialists who I have been lucky to find here in Boston. Boston Children’s hospital is truly a special place, one in which I feel listened too more often than not. I am thankful that it feels like they respect my part as an active participant in my healthcare. I am so thankful that my doctors here have never stopped thinking, questioning and  looking for answers. Even when it takes way more than one try to find them.

I am thankful that I have access to medications, tests and treatments, and that I have never had to worry about financing them.

I am thankful that although I may not be in remission, I am in a place where my arthritis does not hinder what I want to do, or what I am able to achieve. A stark contrast to where I was a couple of years ago.

I am thankful that despite all the worry that the multiple fractures, which I sustained to my right ankle and foot a couple of months ago, would form non-unions, they seem to be healing nicely. Allowing me hopefully to partake in some of what’s left of the swim and dive season.

I am thankful for friends who are willing to drive me to appointments and for those who come to many of my appointments to provide entertainment and moral support. I don’t think you could ever understand just how much it means to me, and how much your presence there helps. For everyone who listens to me when things get tough, who understand that they don’t have to solve the problem (because lets face it they can’t) but know that just being there is more than enough.

All this and more I am thankful for.

Catch up

So its been a while. Ok maybe more than a while. It’s not that I haven’t had anything to say, I have, I’ve just been finding it hard to actually put my thoughts down. Part of it is because I’ve felt for months that I have been on the brink of having my diagnosis changed and that I should just wait till then to blog, because everything felt so up in the air. But it’s now months later and it hasn’t happened, and I’ve resigned myself to the fact that it probably never will.
So why post now? Well as many of you probably know today is World Arthritis Day, and in celebration of it my mom wrote a beautiful post about my families and my journey on one of the Facebook sites that we are both a part of. This post really touched me, and so I felt like I had to share it with all of you. So here it is:

Today is World Arthritis Day and I wanted to write this post to support my daughter Rebecca on this journey she is on. She texted me overnight from university in Boston where she is to remind me to wear blue today. I know she will not mind me sharing some of this with the parents on this site.
She will be 21 in January and has been aware of her SJIA for the past four years but probably has had it since childhood. She is now on Infliximab infusions amongst many other things and is being seen by the paediatric rheumatology department at Boston Children’s Hospital. She continues to have pain, joint swelling, skin reactions, autoimmune difficulties, fatigue and concentration problems. But, and this is a huge BUT, she is determined to live her life despite all of this, determined to meet her challenges head on one at a time, even as there are days I know she would rather come home and curl up on the couch forever. Recently she sustained multiple fractures of her ankle and foot from landing badly on the dive board during diving training and is only starting to understand the management for that. She continues, however, to go to class, do her work, go to her multitude of doctors appointments, is away this weekend with her brother who is also at Uni outside Boston visiting friends, and is planning to go to winter training dive camp in January. She inspires me every day with her determination and resilience and I hope that she can inspire others that this journey of growing into young adulthood with this illness is possible. I know there are many others who share this journey. It certainly is not an easy road and I would rather this was not her journey, but it is, and wherever it may take her and me and our family, we will go. And that makes all the difference for her, I think.
Wishing you all strength and care and love today and everyday.

Tired

I’m tired.. Tired of the million different medications I have to take. Tired of the doctors visits, the tests that never seem to end or bring any real answers. I’m tired of being sore and stiff, tired of being different, but most of all I’m tired of being tired. Tired of waking up and having no motivation to do anything, not because I don’t want to, but because I simply don’t have the energy. I’m tired of spending so much time asleep and mist of my waking hours wishing I was back in bed, only to get there and have that precious sleep be so elusive. I feel like Alice lost in wonderland unable to find my way back no matter how desperately I search, with each way I turn leading me farther away from home. I just want to be done with all of it.

At the moment I seem to be fluctuating between two mentalities. I either feel like I just need to stop everything, stop my medications, stop the millions of doctors visits, stop searching for the answers that might never be found. Or feeling anxious about any change, and wanting all my meds to stay the same because I can’t bare the thought of things getting as bad as they were.

So how have I dealt with this? By inviting in my good old friend avoidance. I’ve been putting off making doctors appointments, putting off tests, even putting off getting my refills. Last week was the first time pretty much ever that I ran out of a medication because I had just kept putting off getting the refill. But their is only so much avoidance one can do, and I think I’m reaching that point.

I just want to shed this weight that is autoimmune disease. Leave it in a corner and never look back. But it’s out of my control, like so many other things at the moment. I just have to work my way back to that place of acceptance, I just wish for once it was at the bottom of the hill rather than the top. I know I’ll get there and the view from the top will be all the better for it, as long as I keep putting one foot in front of the other.

Here we go again

So my second semester at university started this week, and to say I was less than excited for its commencement would be a huge understatement. I didn’t want to come back, I didn’t want to go to class, I didn’t want to get thrown back into the craziness. All I felt about coming back was dread. I couldn’t really even feel that excited about seeing my friends again, even though I missed them terribly. All that kept spinning round my head was how horrible I had felt last semester, how it had sapped all the energy that I had, how I felt like I had taken some giant leaps in the wrong direction. I kept having flash backs of all the times spent crying, just wishing that I could go home, that I could leave school, leave it all behind. Until reason set in and I could push (with much difficulty and probably even more tears) aside how awful I felt, how tired I was, and how this made me just want to give up; and see exactly what I would be giving up on. I would be giving up on something that I love, because I do love to learn, leaving my friends who no matter my mood never failed to make me laugh, and giving up on my dreams.

But even the thought of how much I love the place I am at school at, how amazing everyone here is could get me to feel anything but dread and pure fear. It couldn’t get me to stop thinking about the what ifs. What if I end up in the same place I was last semester, what if I ended up in a worse place, what if, what if, what if…

This was only made worse by the fact that having that much needed winter break had made me feel so much better, almost like a completely different person. I could function again, I wasn’t constantly being dragged down by deep, soul crushing fatigue. I wasn’t sick all the time. I wasn’t perfect (I might never be) but I was so much closer to it than I had been during that semester. And all I could think of was how hard it would be to lose that feeling again, to be thrown backwards.

So when the first day of class rolled around I was not in the best of moods, but after my first class I must say I was feeling a lot better, a lot more positive and excited and maybe even happy to be back. Three days in and I’m still feeling good and am so much more positive about the whole back to school thing. I am enjoying my classes, loving my professors, and sharing endless moments of laughter with my friends. Hopefully I will continue to move through the semester in this way, hopefully things will stay good. But if I don’t I just hope I see how much I love being here, and make sure that I enjoy the experience no matter what is happening to me health wise, because it truly is a magical place.

Two years and counting

Two years ago to the day I experienced the onset of symptoms that lead to my diagnosis of Enthesitis Related Arthritis. I remember that day with a clarity that time has been unable to erase. The stabbing pain that was mistaken for appendicitis one too many times. Somehow I think I will always remember that day, will always be able to cast my mind back to it and see it exactly as it was. Who could forget the moment their life started to change? Who could forget the moment where you felt like everything had been pulled from underneath you?

But having said all that I completely forgot that today was the day, and if it hadn’t been for a comment from my friend that triggered the memory it would have completely flown by without me being any the wiser. Whereas last year was the complete opposite, I knew it was coming from a mile away. I had more of a count down for my first year anniversary f the day arthritis entered my life than I did for my birthday, which happens to be four days later. It felt like this big milestone that I had managed to survive with my little friend arthritis for a whole year. I had come out a little bit battered and bruised, but I had come out the other end. We had a cake to celebrate my one year anniversary, because it’s always better to laugh than to cry right.

I don’t think it’s a bad thing that this years anniversary almost snuck by. It means that I don’t think about arthritis all the time, that there are more important things, and rightly so. It reminds me how lucky I am, to have a relatively low amount of disease activity at this time, and while I might not be in remission, I am a hell of a lot closer to it than I was last year. Two years on and I’m still showing that I may have arthritis, but arthritis doesn’t have me.

To know or not to know….

In biology seminar the other day we started discussing a topic that I personally find very interesting. Have any of you hear about 23 and me? It is a company that provides DNA analysis, along with possible risk factors for diseases. It’s a really cool idea, and the fact that anyone (well who can afford it, although it is not very expensive) can send in a blood sample and get their results, but should we be doing it? Do we really need to get this information, does it actually help us, or does it cause more harm? Do I really need to know that I might have a 3% higher risk than the general population of developing breast cancer?

Some might argue that knowing this might help eliminate things from our environment that further increase or chances of getting this disease. If I know I have an increased chance of brain cancer, I would eliminate other things that might cause it. My opinion is that you should be implementing these changes anyway, and that if you were going to you would. Why should I wait to know my risk in order to be motivated to eat healthier, not smoke, or exercise more. I should be doing that regardless.

For me though the biggest problem is should I know, or does it just create a self-perpetuating cycle. If I know I’m at risk for it, it stands to reason I am much more likely to worry about it, for it to occupy my thoughts more than it would. But why should a disease that I might not get, or even if I do get it, cause me undue stress before I even have it, if in fact I ever do. Does the stress of knowing, make it more likely to actually get something you might not have? Does it become a self-fulfilling prophecy?

If I think back to that magical time before.. before the autoimmune arthritis that has made my body its home, that has started a war that I might never see end… would I have wanted to know. Would I have wanted to know that I would have, could have, got this awful disease. NO! It would have tainted that before, made it less carefree. Why would I have wanted to live with that knowledge, it wouldn’t have changed the outcome, wouldn’t have changed how my life is now, but it would have changed how my life was then, and not for the better. I already have to live with this disease now, with the harsh realities and devastation of it. I am so glad for that period where I didn’t know what was coming, didn’t need to, when the words arthritis, autoimmune, chronic meant very little to me. If I could go back and chose to know, I would choose not to, because sometimes knowledge isn’t power, it’s not that silver lining we think it is.  Knowledge isn’t always a blessing, sometimes it’s a curse. Sometimes it’s just better not to know.

(Just so you know I have not participated in 23 and me, and all of this is merely hypothetical)

 

Letting go

I think I posted here a while ago that I had joined the dive team, because I had decided that while I was in a good place, joint wise, I should take advantage, and do the things that I had missed while my autoimmune arthritis was over active. One of the things that I had missed so much was exercise, all and any kind, but having done gymnastics for years, and diving for a little while, the dive team just seemed to call out to me. Beckoning me to come closer, to go for it, and take the leap (yes, pun intended).

But lately I’ve been struggling. I’ve had a hard time with my immune system due to all the immunosuppressive medications that I am on. I would say I’ve had between 8-10 viruses within the last couple of months. Which at first was alright, well, except the fact that I was sick all the time, but it felt like more of a nuisance than a big problem. But lately the viruses have been getting worse, sticking around longer, and worst of all triggering my autoimmune issues. I’ve been exhausted, my joints have been flaring on and off, and then on top of that I’ve still had to deal with having a virus. This has led to lots of missed classes, work that seems to endlessly need to be put off to tomorrow because I can’t manage to get it done, and missed dive practices. Every time I’ve felt better and up to trying to get back into the water again, the next virus seems to come along and knock me back off my feet. I’ve been trying really hard not to let this stop me from diving, from doing what I want to do, what I feel I should be able to do. I’ve been showing up to practices, and stretching and working out on the bikes when I can’t dive, and pushing myself to get back into the water as soon as I can, which perhaps has not been the best answer. But I wanted to keep diving so badly. Diving has made me feel really happy and fulfilled, it’s given me a reason to get up every morning and the team is so loving and supportive.

But at some point somethings got to give, at some point you have to let go. Let go… oh boy is it hard to let go. There have been many, many tears shed. Lots of anger, sadness, denial, and even feelings of failure in this decision. But at the end of the day it needed to be made, diving right now just isn’t the right thing for me, and no matter how many ways I look at it, I can’t change it. I just can’t, not with all the wishing in the world. So my coach and I have decided that it would be a good idea to take the rest of the year off diving, and return to it in my second year, if I think I feel up to it. In the mean time I’m going to work on getting this beast of an autoimmune disease back into control, and slowly building up my fitness and stamina, with the goal of returning to the team next year. I’m coming to accept this decision, and starting, piece by tiny piece, to let go.