MS Reclamation

Social Media Medical Gatekeeping Rant

Remember when you first had symptoms of your disease? When you visited three or four, a dozen doctors and specialists, had referrals from referrals, had a gallon worth of blood draws? Maybe your doctor referred you for therapy, prescribed an antidepressant because it was “just anxiety”, or “just depression”?

Recall how dismissive your friends and family could be, perhaps still are. Do you remember that moment when you found the right doctor, that one person who believed you? When you received your diagnosis, and felt validated, or even relieved, that you finally had an answer?

You may understand that your experience is not the only experience of all of those diagnosed with the same disease/disorder you share. Your immune system decided you don’t get to walk this week, but there’s a wonderful woman in your support group who’s blind in one eye and struggling to find the right words, it’s all awful and you can see and understand what’s right there in front of you.

Considering this, why do you feel like the pharmaceutical companies, your doctor, and your personal experiences have given you all of the answers? That you completely comprehend the full extent of this condition and possible side effects to related medications? What gives you the confidence to say:

“It’s not your medication. My doctor told me that’s not a side effect, it’s not in the “welcome to this medication” prescribing pamphlet, it’s something else.”

“That’s not this disease.”

“Don’t take that medication, change your diet. This diet is working for me, I have no evidence of disease.”

Did you ever feel like a hypochondriac? Second-guessing yourself? “Maybe it IS all in my head.” Think about the side effects you have experienced, the strange symptoms, has anyone in your medical team ever said “Oh I’ve never heard of that before” or “that’s not related to this disease”?

If you search within discussion groups, forums, etc., you will find at least a dozen people experiencing issues that are atypical of a condition or medication, maybe even hundreds of people. Some will have paradoxical effects, allergic reactions. Some on these medications may die, that isn’t catastrophizing. You may have to search for them, or just read two posts below what you’re commenting on to find a shared experience.

In a Facebook group for one of these medications, I saw dozens of people sharing that they’re losing hair. For every post from someone suffering, I see several responses that hair loss is not a side effect of this medication. Replies including “it must be another medication” and “it’s stress.”

Meanwhile, I was also clogging my drain every time I washed my hair, even when I brush vigorously before. Hundreds of strands coming out in both normal shed and clumps, where before I may have noticed losing just a few under the same circumstances. There are dozens of articles that mention this issue, hundreds of posts, even conversation about whether or not this should be included in prescribing information. It’s in the FAERS database. My not-at-all-surprised neurologist suggested I try biotin or a hair, skin & nails supplement.

Clearly, it’s real.

I’m relieved it’s not a problem for everyone, especially given I’m self-conscious enough to know how detrimental this can be for some of us. Is it the worst issue? Perhaps not for me, though I can’t say with confidence that’s how others feel. “It’s not this medication” when stated with certainty as fact, serves as an example of no matter how small an issue might be, can be a weaponized reminder of the struggle it was to get where we are now.

This specific group eventually broke down into a profanity charged name-calling war. Even stepping in to help, offer advice, or try to console someone starts flame wars. I’m done. (Ironically,  Reddit is “known” for being toxic, but comparatively the community there is like going for a spa day.)

It’s one thing when people without your condition are inconsiderate or judging. They may literally just not know better. It’s another when you attack people who have been through what you have, gaslighting, judging them for something that if the tables were turned, would hurt you.  Why the hell would you do that to someone else, knowing what it is you are doing?

The other humans you’re trying to tear down are people like you.  Especially in these very specific circumstances, most of them have been through much of what you have, a shared experience. Their struggles vary, but no two human experiences are the same. They might have it better or worse than you, but even the idea of better and worse is subjective. We aren’t them, we don’t actually know anything.

Please be mindful of others. Just because you can take out your frustrations and abuse others online, doesn’t mean you should. You likely wouldn’t say things to their faces in person. The anonymity or freedom from the consequences of your actions online isn’t a good excuse. These actions still define you as a person.

I started writing this post before I even registered this domain. Technically it’s why I started this “blog” at all. I wanted a place where I could share information, or vent when necessary. I know the weight of the things we say and do online, the real-life consequences of our actions. That is the criteria by which I would judge whether or not I should say something. I don’t generally get opportunities to say these things in real life, or I would.

I can’t stand by and watch people tear others down, but I also can’t engage in each of these fights and try to assume moral authority.  It’s up to us to decide what kind of person we want to be and to live by our own ethics. I just wish others would reflect more on the actions they take and understand whether or not what they’re saying fits within their own established framework.

Is it serving you? Is it serving others?

I don’t relish the idea of posting this. I had it set aside somewhere else and happened across it. I’ve got my own shit I need to fix too, at this point I’m actively working on it. (Therapy, mindfulness meditation, I highly recommend.) I can say with confidence, I don’t maliciously try to bring others down with me.  I can be judgmental, but it’s generally when other people are being what I think of as assholes.

I am posting this because of the improvements I’m making for myself. In order to move forward, I need to embrace the things that make me uncomfortable, rather than avoiding it. From here on this blog-thing should be more optimistic and productive, I’m not this upset anymore.

With that, I’ll leave you with:  Being sick doesn’t excuse being a jerk, by Carolyn Thomas. This post reminds me to be grateful, mindful of others. It also reminds me that while things like my post here feels aggressive to me, other people may have similar thoughts and feelings, and it’s not so rough for me when they say it.

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