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Medical devices & shame


aec8857

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Hi all!!

A bit of background - I first discovered this forum a while back when I was first looking into IV fluids for my POTS. I've since had a series of crazy good luck with super understanding and knowledgeable doctors (but bad luck with my health speeding downhill) and long story short, I now have a port and receive infusions five days a week. My question is in regards to the port - how many of you have one/any other visible medical device and how do you deal with it? I had to attend a family funeral over the weekend while accessed (we tried to avoid it but I've been in a crazy flare), and unfortunately part of my port was visible with the dress I was wearing. I had several comments made by family members essentially telling me to cover it up. My mother even told me it would scare the children, and my grandfather told me I should invest in clothing that keeps it covered. I want to talk to my mom about some of her comments but I don't even know if I have any right to be upset, like am I actually the one in the wrong here? I'm just pretty frustrated and could use some advice!

Thanks y'all!!

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43 minutes ago, aec8857 said:

how many of you have one/any other visible medical device and how do you deal with it?

I really think that is your personal choice! I have a pacemaker and the scar and bulge are obvious but I don't make any effort to hide them. I think it just depends on how you feel about it yourself--medical devices are not shameful in any way. It is just like the decision someone who is getting chemo and loses their hair must make--should they cover their head, wear a wig? Whatever makes them feel comfortable. Best wishes!

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Family can be hardest on us and most hurtful --they speak their minds candidly in situations where most would not, and maybe without thinking.  

I don't have personal experience with a port but many on the forum do and someone with experience will likely respond.  But IMO as long as it is safe for you for the port to be exposed I don't feel you are under any obligation to cover it in public unless you want to.  I think in our culture we often want to cover up signs of illness and it's not mentally healthy to be in denial or secretive.

Hope you feel better soon.

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I think your family was out of line. You don't have to cover it. Illness and medical devices should not scare children. They just need to have it explained to them and they are generally ok. Adults set that tone. I have used a wheelchair off and on for 15 years. My family was ok with it. My mom is more horrified and unwilling to accept my weight gain. You didn't do anything wrong. Don't let them keep you from seeing family.

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@aec8857 - I have a port for IV fluids and keep it accessed Monday through Friday ( remove it Saturday to prevent break-out from the dressing that i am allergic to ). If I wear a top that shows any part of the dressing I usually cover it with a scarf. This is not because I feel self-conscious but rather to avoid questions. People have asked me why I have a port and if I try to explain what POTS is and why the fluids help it's just too much effort for me. I also might wear a t-shirt or undershirt that cover it. 

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