@devsmaj - Your post was really interesting to me, because it's like the "parent" version of one I just wrote in the "Visiting Mayo" group (connect.mayoclinic.org/discussion/what-if-it-is-all-in-my-head/). I wish I had answers or reassurances to offer, but all I can really say is I feel a lot of the same things as you do. I really resisted the suggestions that I go to Mayo for several weeks; no matter how bad I feel, I never think I'm quite "sick enough" to warrant the financial expenditure (I'm also single, although in my 30s still trying to finish off student loans, car loan, etc.; the only chance I have of being able to pay for this is with the help of my parents/grandma) or the hassle - I seem to have this perception that since I'm not bleeding profusely, literally unable to walk at all, showing off-the-charts abnormal test results, absolutely completely out of any other even remotely plausible doctors or tests to try, routinely hospitalized, etc. that maybe I'm just "not trying hard enough" or that it's "all in my head". Being in the reverse of your situation (I'm the one being treated/someone else is paying), I am acutely aware of what kind of sacrifice and cost this would mean for my family, which pretty much triples my anxiety and guilt and doubt about whether I'm "that bad" or couldn't somehow fix it or feel better if I just "tried harder". I too have been on the rollercoaster of thinking "This next test/doctor/medication will have the fix" and being so disappointed that it doesn't. So why did I finally submit the application to Mayo? My dad. He's never questioned (at least to me) whether there really is something wrong, he's never complained about the additional financial burden, he's been an occasional ride to appointments or testing, he's been a sounding board when I'm trying to make decisions about next steps or having a breakdown, and, maybe most importantly, he's never shown a shred of doubt that we won't find an answer to this or get through it.

I don't know you, and I don't know your son or your full situation. But I wanted to share this with you for two reasons; first, I think it's important that you know how much impact you are having, and can have, on your son's ability to cope and keep going. When we're sick or struggling, we tend to be hyperfocused on ourselves and our own problems, and can have trouble recognizing that what we're going through is hard on those close to us too. Over ten years ago I had a really difficult patch in high school, and while I often admitted feeling guilty about being cranky or difficult with my family to my counselor, it never seemed to translate into my behavior and I never told my family. They moved heaven and earth to help get me diagnosed and treated, but I certainly never showed appreciation for it -- looking back now, that almost makes what they did even more extraordinary since they kept fighting for me no matter how I treated them or whether I acknowledged their efforts. So, coming as a daughter and the sick one, I want to let you know that your care and determination DO matter and make a difference no matter if our words or behavior show that or not. On behalf of your son, thank you for what you're doing.

The other thing I wanted to emphasize is that just as you have your own doubts or fears that you likely hide from your son to protect him, he too probably has his own particular set of issues that he's dealing with that you might be completely unaware of. In order to continue being strong for each other, you both need to have a safe outlet to express those moments of weakness or fear. It's very possible (and even likely, based on my experience) that you're both putting on a good face or trying to bury the "bad" feelings to prevent the other from worrying, or out of fear of what the other would think or how they would react if they found out. I really suggest that you BOTH start seeing counselors to help you deal with the uncertainty, the fear, the anxiety, etc. As a caretaker, it's easy for you to neglect your own needs and health, but ultimately you won't be able to help or take care of your son if you don't take care of yourself. If you think of your body as a jar, the more you push down or ignore or deny your own needs or worries/fears, the less room you have in the jar to help carry any of your son's pain or worries. Eventually, those problems or negative feelings are going to overflow and show up unexcectedly or uncontrollably, or weigh you down so much that you can't do anymore and you collapse. The same is true for your son, except he's starting out with an extra big old rock in his stomach that's his actual physical illness weighing him down and making him "fill up" faster. Regardless of when you get a diagnosis, or what that diagnosis is, the "leftovers" from those feelings or the new ones that replace the old will still need to be dealt with. What your son is going through -- feeling out of control of his own body and helpless to fix it -- and what you're going through as a parent feeling his pain and feeling unable to help, is just really tough stuff. And the honest truth is, a diagnosis for a chronic problem is not likely to stop being tough just because it's diagnosed. We tend to think of diagnosis as the answer, the end of the road, but I can say from experience, it's usually just a change in focus from "What is it?" to "How do we fix it/live with it?" that presents a new set of challenges. I really encourage you both to get counseling, so those negative feelings aren't building up and slowing you down from conquering this.

I truly wish you both the very best, and send only good vibrations your way. Never forget or doubt that your son loves you and your efforts are meaningful to him, and seek counseling for you both to help deal with the inevitable challenges a chronic illness (diagnosed or not) brings. I'll keep my eyes peeled for an amazing story about how Mayo changed your life soon to help me maintain my own hope. Blessings!

Jump to this post