Recently, I wrote a post that ended up being quite popular within the dysautonomia community. It’s actually been the most popular post I’ve written this year. I honestly have no idea why; I have read it over and over again and can’t seem to find what is so remarkable about it. When I asked my husband, even he said there was nothing profound about it. (Thanks, honey; I can always count on you to be honest. ?) But whatever it is, I’m still grateful for the 843 hits, plus the 70 Facebook shares thus far. (That’s a lot for my blog, ok?) To those who found it worthy of reading and/or sharing, thank you so much! I hope the post was helpful to you in your own fight, or friend’s or family member’s fight, with dysautonomia.
It was encouraging to me to write because as I reminisced, I realized that I have made some decent progress since I was diagnosed in January as I’ve teased out what works and what doesn’t regarding symptom management. Things are a bit challenging at the moment because my cardiologist has been on unexpected medical leave since April (starting two days before my appointment where we were going to start Florinef) and I don’t see a POTS neurologist until July (after having waited seven months for the appointment), so right now everything is on hold and nobody is managing my POTS at all. So I likely could have made even more progress by now had things gone differently, but I’m just being patient and trying to do my best in the meantime.
But that particular post unfortunately brought up another issue that coincides all too often with posting things of a medical nature on social media: people who feel they have the right to judge you for how you’re handling your illness.
Support groups can be vicious, in all honesty. I left many endometriosis support groups because they were just full of a bunch of women and girls yelling at each other for no particular reason. But to be fair, given the disease, maybe it was the hormones…
But that’s a toxic environment. No matter the disease state in question, instead of judging, we should be lifting each other up and supporting each other as we make decisions with our medical care teams on how to direct our own care.
But I was attacked in one particular dysautonomia support group because of the aforementioned post. It’s not even like I was giving medical advice that people took issue with, but judgment was being passed directly on me by no fewer than two individuals for how I manage my POTS. Apparently since I didn’t spell out every last detail of how I spend every second of my day, it was assumed by a group member that I’m a lazy, useless human being. It was said that my “sedentary lifestyle” (seriously, I’m not sedentary) was going to, in this group member’s words, cause me to be “a goner far sooner than later.”
For future reference, you do not dare joke about death with someone who’s had a brain tumor. But this individual didn’t know that because they decided to pass judgment on me without knowing my full story. It can take up to a year to fully physically recover from brain surgery (to the point where you can even do more than walk to your mailbox) and mine was only eight months ago.
Not to mention the comment that I “didn’t feel the need to fight for [my]self.” (I know, I can hear my friends and family laughing right now.) Additionally, my expression of frustration over figuring out a helpful exercise regimen while taking into account my other illnesses and injuries was misinterpreted by another individual as “giving up.” So even though I really didn’t have to, I set things straight and did some editing to paint a more accurate picture of my daily life.
But the accusation about not feeling the need to fight for myself…I’m a fighter. If you want to know how, you can actually educate yourself by reading more of my blog. I’ve been kicking butt and taking names for 17 years, since the onset of my endometriosis symptoms at the age of 14 (and the diagnosis that took another 14 years to make), long before I even had POTS.
I appreciate suggestions from other individuals. I love having discussions about what treatments and modifications work for others and how they might work for me, too. After all, I am a healthcare professional and love to talk shop sometimes, hehe. But it’s made me think. What right do we have to judge one another for how each individual decides to handle their own chronic illness? Especially for a condition like dysautonomia, where there are no clinical guidelines on how the condition should be treated.
Not to mention the fact that no two POTS patients are the same. Some patients with POTS are able to work and live mostly normal lives, while others are literally bedridden while they try to figure out an effective treatment protocol. Some people really do have it worse off than you do. Would you accuse those individuals of giving up? Would you accuse those individuals of not fighting for themselves? I couldn’t walk normally without crutches or a brace for almost two months after knee surgery, but that was a normal part of the recovery as I went through four months of on-site physical therapy. I had some setbacks due to overdoing it at work, but I was certainly fighting for myself and not giving up, even if it took a long time for my gait to return to normal.
Let me reiterate: no two POTS patients are the same. We cannot compare ourselves to one another and assume one person is doing it right and the other person is doing it wrong. Your child with POTS and EDS may be thankfully frolicking about like a normal child their age, but your child (I hope) doesn’t also have celiac disease, a knee injury, multiple other dance injuries including the left shoulder, left arm, left hip, left knee, and left ankle that cause physical rehabilitation to be a unique challenge, endometriosis, adenomyosis, depression, social anxiety disorder, infertility, a brain tumor in remission, an aneurysm hopefully on its way to oblivion, as well as POTS and (probably) hEDS. Everyone is different. The two of us aren’t even comparable except for the fact that we share one or two disease states. I appreciate a pep talk now and again, really I do. But accusing me of giving up when all I’ve done for the past 17 years is fight to be well despite my incurable illnesses is just inappropriate and low.
We don’t need to fight with each other. If those two individuals read this, and you know who you are, I know you weren’t speaking with malicious intent and I harbor no ill feelings against you. But we all need to keep in mind that we are all struggling differently with a chronic illness (and possibly other chronic illnesses as well) that manifests itself in many different ways from one individual to the next. We need to have compassion on one another and support each other, not tear each other down.
Let me end with this. Dysautonomia is a disease state where sometimes the only support an individual has is from other people with the condition in a support group, people they’ve never met and probably never will. Do you really want to be the one responsible for criticizing them in such a way that they wind up with no support at all?