Medical Boundaries

Hello, my zebras in spoonies thanks for coming. I’m glad that you’re here. So I’ve been talking about boundaries a lot over my last couple posts and this is also going to be about boundaries. Specifically, I want to talk about medical boundaries, this comes up a lot for those of us who have chronic illness.

I think that the first place, where medical boundaries comes up for us is in regards to decision making. If you are a legal adult who has guardianship of yourself, then you have decision making power for all of your medical stuff. And you don’t need anyone else’s input, permission, opinion, consent, agreement, etc. in any of the decisions that you make in regards to your health. Now you always have the right to include other people in your decision making process. But it’s important for you to remember that it is a choice that you make, and that there is no one in your life who is entitled to be part of your medical decision making. That is always exclusively yours and you absolutely should draw boundaries when people in your life try to make decisions for you, especially medical decisions, and especially if they’re individuals that don’t have full information about what’s going on.

This falls into the intellectual boundaries really because it’s about respecting that individuals have the right to their own ideas, their own thoughts, their own opinions, and we as legal adults have the right to make our own choices. So it’s really about having a respect and having boundaries around our intellectual status and seeing us as intellectual equals, who deserve the right to be intellectual creatures and make our own decisions. But it kind of expands further and becomes more specific to the chronic illness person, that piece about decision making.

Another thing that comes up when you have chronic illness is boundaries around medical information. And this is something that often comes up in context of whether or not people that we have relationships with believe that our diagnosis is real, and sometimes we feel compelled to prove to them that our diagnoses are valid. So first just let me say that you owe them nothing. Whatever diagnosis you have is yours and you owe the people in your life nothing; no justification for that diagnosis. If they choose to believe the validity of the diagnosis or not, that’s on them, that’s their problem, you are under no obligation to “sell them” your diagnosis. That’s between you and your doctor. It’s your doctor’s job to investigate your medical problems, and it’s their responsibility to sell you on the diagnosis, if they make that diagnosis feel like it fits to you and the treatment plan is working for you, then that’s it. That’s enough. You don’t need anyone else’s two cents on it.

You always have the right to say no in giving people your medical information and it doesn’t matter who they are. Doesn’t matter if they’re your spouse, it doesn’t matter if they’re your parent, it doesn’t matter if they’re your brother or your child. You are not required to give them information about your medical status. How much you disclose should be a matter of how safe and how comfortable you feel in disclosing that information. It shouldn’t be something that you feel bullied, pressured or compelled to do when you disclose your medical information. That should be about you, not them. So absolutely, it’s really important to have boundaries around your medical information.

The last place that I think that medical boundaries come up with chronic illness patients is around our medical accommodations, and this kind of falls into informational boundaries and decision making boundaries. We absolutely have every right to ask family members to make accommodations, and they then can either choose to respect that boundary or not, and if they choose not to respect that boundary we’ve drawn that we say we need to because of medical stuff. It doesn’t change any obligation that we have in context of either decision making, or informational boundaries. We aren’t required to give them more information, or an explanation of our decision making.

What is then required if someone doesn’t want to respect a boundary when we say we need this thing because of a medical reason is that we then have to decide whether we’re going to stay in that situation. So, an example that I frequently use with this is that I am sensitive to bleach; the fumes of it can make it difficult for me to breathe because it triggers my mast cell stuff, and I will ask people that are around me to not use bleach and a respectful response is to simply not use bleach. There are some people who are curious, and who will ask and I’ll just give the basic information that I have the equivalent of an allergic reaction to it, that it makes it difficult for me to breathe. But I’m not even required to give that, that’s just what I’m comfortable with. How much information you give to explain the reason for asking them to do something is up to you. Just understand that they are more likely to to meet you halfway if you give them at least some kind of basic rationale as to why you want them to change their behaviors.

If they refuse, and say I’m still gonna use this bleach now I have to decide whether or not I’m going to stay in that environment, and risk having a mass cell reaction, or whether I’m going to then say to this person, “okay if you’re going to use bleach then I’m going to have to leave. I’m sorry that we’re not going to be able to visit today, but I really can’t be around the bleach.” And that’s the option that I take. I would say that if someone’s not going to respect something that you say is harmful to you that you should probably reconsider that relationship. If they’re not interested or concerned when you say something is a safety issue for you or a health care issue for you, I would question how valued you are to them if your safety and your medical wellness isn’t important to them.

So those are the kinds of things that I feel like come up when we have chronic illness in the context of boundaries and I think that it’s really important that we think about how these boundaries affect us and how we feel about our decision making and our information and how we want to address these issues. Before we get into the mix of it because the reality is that these boundaries are going to be things that we need to draw frequently, and that because our chronic illness changes a lot over time, these boundaries are also going to be things that will frequently change over time. So it becomes important for us to be very conscientious about thinking and considering how we feel about the way that our chronic illnesses affects the way that we socially engaged with other people, the way that it necessitates that we draw boundaries in our relationships.

Thank you for coming and hanging out with me today. And until we see each other again: Stay safe, and draw good boundaries. Bye.

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