Defining Yourself By Your Disability and Seeing Yourself As Sick

Defining Yourself As Your Disability

 This article makes a really good point I have  been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.

Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.

Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself?  When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.

Seeing Yourself As Sick

While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.

I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.

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*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.

My Experience At The Dysautonomia International Conference 2015

The Dysautonomia International Conference was in July in Washington DC. I was able to attend this year and it was a really impressive and informative conference.

I flew to Dulles, Virginia a day early from Denver because I have never been to Washington DC and wanted a day to recover from traveling. Friday my parents and I drove around DC checking out monuments and museums. I stuck to my wheelchair so I would still have some spoons for the conference. 

Friday & Conference Attendance

Friday night we checked in. We got our name tags, a flash drive with some of the presentations, water, a pen, a bag, salt packets and some product used for dry mouth I can’t recall the name of. Next I played a “breaking the ice” game that definitely was directed at teens. At first I was worried because the conference felt like a younger crowd and I had doubts that I would have anything to talk about with a bunch of teens. These aren’t your average teens. Young women with POTS can be so mature. I spoke with one girl who was only fourteen but was more mature than some people in their twenties. I found myself really amazed by this a few times throughout the weekend. Going through something hard when you are young can really age people.

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The conference was primarily women, patients and caregivers. There were about 450 people and over 100 medical professionals. Most of the patients there were young women, many in their teens. There were some parents there without their kids and some patients there by themselves. Many others had their whole family supporting them at the conference.

I attempted to eat at the hotel restaurant (decent food overall- gross parfaits) and then went back to my room to get to sleep early for the super busy next day.

Saturday, CME, & Keynote

Saturday during the day the talks started bright and early. I heard really inspirational talks and presentations filled with more information than I could scribble down wildly. I will write more on these presentations in the future.

Lunch was arranged by region in hopes that you would meet other people close to you. The Continuing Medical Education (CME) and patients were combined at this point. CME had its own presentations geared at medical professionals throughout the conference. I went to a few CME sessions and was surprised by how much overlap there was in topics with the patient’s presentations. In fact, the patient presentations (presentations aimed for patients are caregivers) were even better than the CME presentations and that seemed to be to the consensus among medical professionals.

I was repeatedly amazed at the conference by how knowledgeable other patients, parents, and caregivers were. There were points, as there always are at this sort of thing, when people stood to ask a question but actually shared their life story. It always happens at this sort of thing. However, most of the questions were really well thought out and indicated a higher understanding of some more complex Biology.

Unfortunately at lunch Colorado was squished in with California and there was no one else at my table even remotely close to Colorado. They did a great job with the food and dietary needs. There definitely wasn’t enough salt (but is there ever). During the lunch break there was also a vendors fair. Dysautonomia International was selling awareness gear, NormaLyte, medical testing facilities, and books to be sold and signed. After the afternoon break there were even more presentations before the awards ceremony.

The keynote speaker was amazing. Dr. Lisa Sanders (real live House, MD) spoke about tough diagnosis, a struggle we all relate to, and was a wonderful speaker with interesting stories to share. Her book is now definitely on my to read list.

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It is never lupus.

Next, the physician of the year award was given to Dr. Blair Grubb. A video was shown dedicated to his wife who he lost this last year. It was absolutely beautiful and extremely sad. He didn’t speak, but it was beautiful and I don’t think he needed to.

Volunteers of the year Sarah Mendelowitz and Hanna Gully were announced and the people who ran the conference as well. They also really helpful in the talk about advocacy.

Meanwhile, there was more food my stomach wasn’t going to let me eat, drinks, and a very small dance party in the middle of the floor. Mostly teens, it was adorable. I didn’t stick around through much after that; I was exhausted from the day before.

Sunday & Lobby Day

The next day started bright and early with more talks and presentations. Later in the day we had a short lunch break and then more talks. About midday when I wasn’t too interested in the topics I ducked into a room near the presentations to participate in Mayo Clinic’s research. The research involved the Beighton Test (surprise I still have hEDS), questions, an examination of your legs for blood pooling, a blood draw, and a lying and standing blood pressure and heart rate monitor. It was nice to feel that I was contributing to learning more about POTS.

After the last presentation there was a final question and answer panel. It was a little crazy. A lot of the questions were great, some were not. A lot of the answers were great, or some went on and on for fifteen minutes saying nothing.

At the end of the day Sunday there was a training for Lobby Day which just under 100 people participated in. With how hot Washington DC was and how short on spoons I was doing I decided to skip the Lobbying. Honestly, I was amazed that I didn’t have to skip more presentations. It was a really long couple of days, especially after traveling with POTS. I opted for swimming and talking with some other POTS patients before I went back to my room for a movie.

Standing ovations were given multiple times at the conference. Everyone certainly deserved them- I just found it funny at a Dysautonomia Conference.

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Oh good we are standing again.

The overall feel of the conference was one of hope, support, and positivity for the future. I hope to be able to attend again. The people who ran the conference were really amazing and did an absolutely wonderful job.

The Problem With Ehler’s Danlos National Foundation (EDNF)

I usually talk and write about POTS and Dysautonomia. Like many people with POTS I also have hEDS (Ehler’s Danlos). The Ehler’s Danlos National Foundation (EDNF) had a conference this weekend. One doctor, Dr. Lavallee, managed to outrage most of the EDS community with just one slide.

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Dr. Lavallee put up this slide. If you cannot read it says:

“Just Do It!
Do not feel sorry for yourself
or I will introduce you to:
-US Veteran
-baby with retinoblastoma
GET OFF YOUR NARCOTICS”

Understandably people are upset. I have talked about it before and I will say it again. Stop comparing illnesses. Stop comparing pain! It is even worse coming from a doctor. In telling you he will introduce you to someone with it worse he invalidates your suffering. I also have no idea why being introduced to a US Veteran would make me “stop feeling sorry for myself.” My partner is a veteran and I think he would agree with me that EDS sucks. Ehler’s Danlos isn’t a joke and should be taken seriously. Plenty of Ehler’s Danlos patients have ended their life to get away from the pain, which brings me to Dr. Lavallee’s second point.

I understand wanting to avoid narcotics when you can, but sometimes they are the only thing keeping some of us alive. There comes a time in a lot of painful chronic conditions where you cannot and don’t want to live in that much pain. At that point isn’t it better to give patients narcotics so their quality of life is decent enough to not want tot kill themselves? I’ve heard a lot of stories of people at this crossroads. After a certain point of being in that much pain everyday narcotics ae the only alternative to suicide. Dr. Lavallee making a blanket statement of stopping all narcotics is just ignorant.

After this, and a lot of outrage, the EDNF posted this:

“I am not even home yet. I’m still in a hotel room, watching outrage unfold at Dr. Lavallee’s presentation of less than 24 hours ago, while now trying to form a response on a cell phone.

Conference materials include: “The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. EDNF does
not control and is not responsible for the content of presentations.”

This is for two reasons. EDS knowledge changes quickly and views on treatment are radically different. EDSers are not best served, in my view, by having their access to these differing perspectives restricted to a narrow window of what is accepted this year, but by seeing the wide range of approaches and deciding which are valid for themselves. We are very different zebras. We are not all the same. What works for one may not, perhaps will not, work for another.

Second, speakers volunteer: time, thoughts, expenses. They come to talk to us because they want to, not because they’re paid to or told what to talk about or how to think.

Last in all this, I’d ask you to remember you are ripping apart a fellow EDSer, and one who helped EDNF survive and thrive. Dr. Lavallee has EDS, what he talks about he talks about from experience, both his own personal experience and that of his many EDS patients over decades. His perspectives may infuriate you, but they work for him and those he treats. Are those EDS experiences simply wrong because they’re not the way some of us manage our own EDS? Are some with EDS better than others? We’re a large, complex community and we’re never going to agree completely on how we each cope with having our own particular version of EDS.

Anyway: I am about to be gone on travel to get home, so I ask you please to be a little easier on us until we are all back to
our loved ones and can actually think. We can discuss this more over coming days; nothing that happened will be changed, and while outrage is fast, careful thought is not. It hasn’t been a full day yet since conference ended and typing on my phone is not easy on my EDS (and aging) fingers. Thanks for your patience.”

The EDNF should screen what is in presentations and presenters. The whole “intellectual property” excuse sounds like them trying to distance themselves and take away blame pointed their direction. It was still their conference; they are supposed to be helping those with EDS and supporting us. Instead they let it another doctor to tell us it is in our heads and we are being hyperbolic. Haven’t we had enough of that? Wasn’t the EDNF formed so we could raise awareness and education about EDS and stop this very thing from happening? If we can’t even get our own experts to show an ounce of compassion what hope do we have for the rest of the medical community and even society in general?

The EDNF points out that Dr. Lavallee is a volunteer and volunteered his time, energy, expertise. Well he ended up hurting this community more than he helped. That is like volunteering at an animal hospital to kick puppies, but we will let him kick puppies because volunteered, right?

This part is even more infuriating. Dr. Lavallee has EDS?! Yes, he has EDS and still can’t muster any sort of compassion or empathy for other’s with EDS?! I don’t understand why him having EDS means that we can’t disagree with his methods or dislike him. Knowing he has EDS basically just confirms my thought that he isn’t the greatest human being.

The EDNF talks like Dr. Lavallee just suggested a controversial treatment. No, he compared illnesses in an unhealthy, unprofessional, and unacceptable matter. He implied that we all “feel sorry for ourselves” which is not true. EDS sucks but the community doesn’t throw many pity parties. I see a community full of strong people doing the best they can through a really difficult illness.

In addition, the EDNF claims that his perspectives work for him and those he treats. After reading comments about Dr. Lavallee, I don’t think it sounds like he is so terrible one on one, but I suspect he just doesn’t make his backwards views known. The reviews are mixed but no one mentions him comparing illnesses or being a jerk. I hope he doesn’t say these things to people on an individual basis. Maybe we are now seeing his true colors? One patient in their review said that Dr. Lavallee claimed he could make her symptoms basically go away through exercise. A lot of us have tried exercise but it isn’t a cure-all for most. So no, EDNF Dr. Lavallee’s “perspective” doesn’t always work for his patients.

The EDNF’s mission statement states that “Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder, Ehlers-Danlos syndrome…[by] Providing a network of support and communication.” Well the only support I see from the EDNF on this issue is of Dr. Lavallee.

Dr. Lavallee is a large supporter of the EDNF and has been involved with them for a very long time. I suspect this is part of the reason they sided with Dr. Lavallee rather than supporting us like they should be. It is just disgusting.

hookers

(I’m not actually going to make my own EDNF with blackjack and hookers)