My “invisible illness”

I got a port put in about two months ago. My chest/upper body is kinda bony, so the port is very visible. The incision scar is also quite red, and large. It seemed for a while the nurses at my clinic, and hospital finally seemed to understand how horrible my migraines really are. With the port for a while, I thought having a visible representation of my pain would help. Apparently not. I can’t imagine that many drug seekers go through surgery and a port to get their high. But, apparently a few at the hospital still don’t believe my migraines are as debilitating as they really are. I already feel so incredibly guilty, and horribly all the time. I don’t need nurses thinking they know what’s best for me, and that waiting two hours at the hospital for my cocktail, is going to make me better. The last two months have been some of The worst. I’m not sure I’m going to last much longer. Thanks, I just needed to vent.

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Comments

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  • ndw6888
    2 years ago

    Hi Erin, I’m glad you vented. I’m in a particularly hard spot and it helps to read what others have to say. The anxiety of feeling like we’ve let others down in some way or that we are somehow culpable for our own pain seems to be a really common thread through the stories I read. I have struggled so much with these feellings myself and it feels like a lifeline to know I’m not alone in it.

    I hope the port continues to help and for your family to become supportive to both you and your sister. I’m glad you exist.

  • Joanna Bodner moderator
    2 years ago

    Hi there Erin,
    It is so nice hearing from you again, however I am so saddened to hear things have taken a bit of a turn for the worse these past two month. I am sure this must be a lot to contend with as I know you were looking forward to finally being able to use the cath based on your last story. This was a lot to undergo and as you said you were already dealing with so much. As we do with all of our members is we encourage you to get the support you deserve from in-person options, not only from your doctors, but counselors, therapists and support groups. Everyone needs a space to vent and know we are here for that and to always lend an ear, but if you ever feel like giving up, please make a call to this hotline: 1-800-273-8255 or chat with them online at https://suicidepreventionlifeline.org/.

    You are never alone in this! Wishing you a good night. Warmly, Joanna (Migraine.com Team)

  • Erin author
    2 years ago

    Thank you. Just knowing all of you are out there, makes a big difference. Knowing I’m not alone really does help. Though lately, my own family, except my caregiver sister, who is a Type I diabetic, with three complications already, has also apparently forgotten how debilitating my migraines are. It has been even worse this last week. Apparently, just my presence, or the thought of my pain, makes my 90yr old grandfather start to cry. He thinks that no one has, or will ever “cure” me. He doesn’t seem to realize there is no actual cute for migraines. So I’m not allowed to see, or even speak to my last remaining grandparent. Seeing my sister also upsets him, so she can’t see him either. It feels like our family blames us for everything. It has made our already god awful lives, even worse. Which we thought couldn’t be possible. Apparently it can. Sorry, I needed to vent again. Thanks to anyone who reads this.

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