“I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse.”

Source: Pain Train

I had some thoughts after reading Shiloh’s post I get into below. It’s unedited, so please forgive. I just wanted to write it and will get back to it later…

The post above is from an online friend of mine, Shiloh. It reminds me how the very people that must often fight to be heard must keep learning better ways to speak to others and can become particularly hard on themselves as their ideas and opinions and even facts are challenged.

It is interesting to me. I see myself in Shiloh’s thinking and recognize how I have in the past shut down my own needs because of my understanding that the person across from me could be inconvenienced by them. I tend towards a general wariness when talking to another person. I wait and actively listen. Part of this is an inherent curiosity and tendency towards thinking before I speak. The other side of it is realizing many have not cared to listen in return.

That has been my experience of things. And, I am okay with that. This experience brings me to Shiloh’s dilemma. She appears to be balanced on a double-edged sword. As a genuinely caring individual, how can she balance raising awareness of her own illness with those who are dismissive with the possible outcome that when she is heard, others who are sensitive and caring will not feel it’s valid to express their own pain?

We all seem to compare ourselves to other people. It’s like when we were children, and we didn’t want to eat our broccoli. When my dad would tell me to eat my ‘little trees’ and that didn’t work, my mom would remind me that “children in Africa are starving.” This one did work. It doesn’t work on all kids, but it sparked an uncomfortable childlike hypocrisy after which I’d gulp each little tree down guiltily.

For me, I started out sensitive in an insensitive world. And, then I had to get tough and tougher still towards the things around me that didn’t make sense. Things full of hypocrisy. The tipping point was getting sick. It was the moments where I was only surviving each moment and so many things seemed out of my control. I could control whether I would remain indifferent to hypocrisy through my words. I could control authenticity of self. Maybe that is why it became so important to speak about the truth of things as I see them while remaining open to alternate truths and adjusting my understanding of things.

As an example, I used to be angry at doctors in general. I believed that if I was being sincere, and they still chose to not believe me then they had failed in their profession. Partly this anger was resentment at having to fight so hard to be heard and pain at unfair treatment. Over time, I found my anger was not working. Being sincere and painfully honest wasn’t enough. I learned my sincerity would only be respected once it was proven I had fought long and hard. It seemed I had to prove I’d been raked over the coals and had come out quiet but firm but patient. This is my impression of things anyway in hindsight.

The day I gave up, truthfully gave up on doctors, was the day I saw something a change in my doctor/patient dialogue. I attribute this discovery to the unhappy truth of my moving so much. Doctors I’d previously found through hard work looking for the best were now out-of-town, and I was tired of going through the same experiences. It wasn’t all positive at first the day I gave up, but it was different from the dismissive ‘there’s nothing I can do for you’ eyes flicking sideways discomfort.

The first time was at a physiatrist appointment. The previous time I’d been to this department, I had come in during a severe episode of dysautonomia. The doctor, a woman, had never met me before, and she saw a young women whose pulse wouldn’t go below 100 sitting there and who’s blood pressure was high and who hadn’t slept the night before from the symptoms. (That’s the last time I drag myself to an appointment while that sick).

I appeared overly anxious and shaky. I was there to get some answers about what was going on in my shoulders having a severe tightness I was feeling on the left side of my chest and numbness down my left arm I thought could be from muscle spasms. I could visibly see spasms and feel the tight cords running under my left arm. I hardly remember the content of this appointment, but I do remember she decided it was more worth her time to verify I was hypermobile because I had a diagnosis of EDS. So I did. I’m unsure what the point was, except to assert her authority on the matter as a physiatrist.

This physiatrist did not have a good impression of me. That’s fine. However, now I had been referred back to this department and was scheduled with a different doctor. After that last appointment I had been simply done aside from working with my neurologist. I ignored the tightness and I learned to live with the spasms. This new doctor entered without saying hello and started by saying, “So I hear you have fibromyalgia” loudly.

I’ll let the facts above stand on their own. There is too much going on in those interactions to break down in this blog entry.

I didn’t get defensive. I didn’t feel little for once. Instead, I felt this empowerment. I knew, after everything I’d been through up to this point, that what was happening was a waste of my time. Instead, I decided to see if he was just confused and answered back just as loudly with my small voice, “I do not. I have Ehlers-Danlos Syndrome. Has someone undone my geneticist’s diagnosis?”

I wasn’t wrong about him and he proceeded to smile and talk loudly and quickly over me how he saw I have been there before. I wish I had taped this interaction, and maybe in the future I will. I was so done, I felt a quiet anger beneath the surface. I became so still that I imagine I appeared very calm. I kept asserting why I was there, because my doctor had sent me to be seen for my SI Joint. He replied there was nothing he could do for my SI Joint unless I ‘wanted surgery.’ I replied I did not want surgery (who the heck wants surgery??) and that I was hoping he could direct me towards some help since this was the University of Washington and I assumed they have great physical therapists. He then proceeded to examine me after which he finally lowered his voice, said that I have SI Joint Dysfunction after looking at my collapsed arches and one leg that was shorter than the other when I laid on the table, and done a few other tests.

After all this antagonism I was handed a script for physical therapy and a nurse came in after saying the doctor had also written me a script for massage therapy. I felt like it was some sort of guilty parting gift.

After this appointment, where this doctor acted so shamefully, I stood in the elevator with my husband and calmly stated I would never seek medical care again unless I was literally in an emergency. I meant it too.

Some months later I still needed a doctor unfortunately to prescribe my medications since our last move. My husband ended up looking for me, because I found the entire ordeal overwhelming. He found one of the top rated doctors in Seattle, and we set up an appointment. I imagine that the success of this was a combination of this doctor being quite brilliant and my own giving up.

The first time I saw him, he sat calmly and listened as I despondently told him why I was there. He then asked questions. Lots of them. I answered, because he was respectful and seemed kind. By the end of this appointment, an hour later, this amazing doctor looked at me and tried to explain how my situation must have been particularly difficult. He said, “Not many people have to deal with all you have to cope with on a daily basis.” Something to that effect. Whatever it was, it told me if anything, this doctor was empathetic.

For once, when I had stopped caring, when I just answered the questions asked and when the doctor cared enough to know, is when I had that moment where I felt not just heard but protected by my doctor. It was obvious he’d reviewed my medical record. Another first, sadly. It was obvious he understood what I was dealing with. And, he also acknowledged that he down-the-line would check my inflammation markers periodically to make sure this was not also an autoimmune connective tissue disease.

Having this interaction taught me that there were better ways to handle my dialogue with a physician. There are times I should have been more outspoken and there were times I should have been more patient and not voiced my worries. It shouldn’t be that way, but doctors are just human beings. We do have to work with them for things to ‘work.’

But, as human beings they are fallible, and they are not always our best option. I never went back to that physiatrist. I do not want to make it my personal mission to teach him how wrong he was. If I find the energy, I may write him a letter, but it’s a tricky situation when that letter will become a part of your medical record.

Shiloh’s post sparked these thoughts, and it brings me back to what I was saying, how I have “in the past shut down my own needs because of my understanding that the person across from me could be inconvenienced by them tending towards a general wariness when talking to another person. Actively listening. This curiosity in me has not served me well with finding answers to my physical problems when I was younger.

It allowed the doctor’s personality, biases, and initial thoughts to run the show with no firm self-advocacy on my own end when I was in an uncomfortable situation. I would think I was advocating for myself by standing firm, but instead it was perceived as unreasonable. It didn’t work.

It did work in that that firm resolution is what kept me resilient enough to withstand multiple setbacks and years not knowing why I was so exhausted or having such severe muscle spasms. Instead being told it must be anxiety and stress. So, maybe it wasn’t inherently wrong but now that I have a diagnosis, I face an entire new set of challenges created by the nature of the diagnosis itself. The very fact that people are raising awareness has been both wonderful and horrible. A post for another time. The negative impact of awareness.

It has required me to learn that the person listening to me, the doctor, has a reason for feeling unsure. No, it isn’t fair and yes, in my case they are incorrect. No, a doctor should never intentionally overwhelm a patient with loud and quick assertions to shut them down like that physiatrist did on a power trip. I won’t stand for it.

I will keep striving to remember though in new encounters with doctors, the amazing experiences I have had and try to let go of the negligence of others for my own sake. It is difficult, but it is for the best.

Which brings me back to pain and Shiloh’s post on the effect of awareness on her family and friend’s not feeling it is fair to express their own pain. We share something in common with doctors. The doctor is wary and has to overcompensate for the number of individuals self-diagnosing themselves with rare illnesses. As a result, they can be especially reactive and behave poorly when someone comes in who has been diagnosed. Like humans do, they react to this wariness on a spectrum of acceptable behaviors.

In the chronic illness community, we are wary of others believing us, because we have been tried time and again by both strangers and those we love. Will they dismiss us? We do not want to feel alone. We do not want to feel doubted, when many of us tend to do all the doubting for ourselves. We fight to accept the illness, and then others fight back to bring us back to doubt. That is why support is so important in this community. We have to remind each other that these feelings are normal.

So, what do we do? Shiloh already is doing it, and I was so proud to see her post. She is not afraid to be self-critical, to point out hypocrisy, to care when family is uncomfortable by her situation. This critical eye is vital to both the patient and the doctor. And, those who we love, we just need to remember these potential effects of disclosing our own difficulties. Try to reach out to them. To remind them that their pain is valid, just as troubling, and that we will support them, because more than many we know what it means to be empathetic and careful.