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When I Went Back to Being Undiagnosed


Being back in the world of the “undiagnosed” is something I never thought I would experience again and sincerely hoped I would never have to live through again, yet here I am! After being diagnosed with multiple sclerosis (MS) 15 years ago, being on and off chemotherapy for the better part of 10 years and a bunch of other harmful medications, I’m learning it may have all been unnecessary. Don’t get me wrong, there’s definitely a correlation between my past treatment plan and my ability to stay “healthy,” but after reaching out to a new neurologist about a recent health scare, he’s feeling rather skeptical that MS is the main offender. To hear that something that has unwillingly become a part of your identity may not actually define you after all is such a strange concept to digest.

When I was first told, I was confused. I felt embarrassed, lost, depressed and anxious, but also a little hopeful that new answers would mean a healthier future. It’s so bizarre to have your illness become a part of “you,” but to have that identity taken away from you after so many years and learn it’s still a stranger. I no longer had an automatic response prepared for all the weird questions from friends, family and strangers – I felt undefined. After 15 years, I had every awkward conversation planned out in my head before it even started. Now I felt like I didn’t even know who I was. I felt like an imposter for quite a while after that appointment. I immediately removed myself from all MS groups, mailing lists and forums and I felt like I no longer had anyone to relate to. It was such a tough and emotional time. It took some serious self-love and encouragement from my loved ones to get me out of that funk and back on the road to answers.

On top of searching for a confirmed MS diagnosis and possibly a new diagnosis related to those symptoms, I’ve also been dealing with undiagnosed chronic pain and weight loss. Although I’ve been very lucky and none of my doctors have doubted the existence or severity of my pain, which I’ve learned is far too common thanks to other contributors to The Mighty, it’s already become so exhausting to repeat myself over and over again. My positive experiences with my new doctors actually listening to me doesn’t stop me from having panic attacks before every appointment. Starting from day one with every specialist is so taxing, not to mention the frustration of having to remember every little detail with fatigue and brain fog! Having to ask for help to get through every test, procedure and appointment has made me feel like I’m mentally, emotionally and physically aging backwards, which is taking such a toll on my self-esteem. It’s so difficult to ask for help just when you were starting to feel your most independent. I’m a very lucky lady and have quite an amazing support system, but asking for help never gets easier.

The amount of anxiety I battle every day over the unknown, over the damages my body has accrued while on such harsh treatments and about the long road ahead of me, often makes it difficult for me to be my chipper and welcoming self in social situations. It’s hard not to obsess over all the questions rolling around in your head and it’s even harder to add unsolicited questions from your family and friends to that mix. It’s been a rather confusing time and I often get flustered when someone asks me how I’m doing. Do I tell them the whole story, if they don’t already know? Is this an instance where it’s easier for them to know everything or is it best to end the conversation hastily with “I’m OK?” Preparing for every new appointment is so daunting that it usually consumes my thoughts for weeks in advance. I often get caught up in the constant stream of questions. Will this doctor be compassionate? Will I be heard? Will I get answers? I feel like I’m always distracted and often lost in my own head to a point where socializing has become a juggling act. I feel like I haven’t been fully present in months.

Being undiagnosed is also exhausting. Wanting to have answers, but not having the energy to find them is such a depressing reality that I know many people relate to. Most days, I want to curl up in my nest of blankets on my couch, snuggle my heating pad and ignore the world. Almost every waking moment I’m thinking about what’s next:

Who do I need to speak with now?

What’s my best option for a successful appointment?

Who do I ask for help this time?

How do I feel less guilty about wasting so much of my loved ones’ time?

Where do I find the energy for all of this?

Such a tiring cycle of thoughts to constantly have running through your head. So many days, I’ve wanted to give up and wait for everything to miraculously go away and for me to feel suddenly better, even though I know that’s not a possibility. On my darkest days, I want to give up and accept that this is my new reality, it often feels easier to stop fighting. It takes a lot of encouragement to want to keep searching for answers and I’m really lucky to get that from my loved ones. They’ve helped push me to continue fighting and have been so reassuring that my need for them is not exhausting them as much as I believe it is.

I’m wading through the waters of self-advocation to an extreme I never thought I would experience. I was lucky enough to have amazing fighters on my side 15 years ago, my parents, but going through this as an adult is a whole new world to me. Fighting for yourself every day can be so hard. Speaking up and getting angry is pretty uncomfortable and still rather foreign to me in these circumstances, but I’ve learned it’s the only way to get what I need. I’ve learned so much from this whole experience already and I hope to find myself with significant self-growth at the end of all of this. My biggest lesson I’ve learned so far and what I hope you all take away from this blog is, it’s true, the squeaky wheel really does get the oil and I’m going to keep on squeaking until I find answers. My squeaking has already led to so much help and acceleration that I don’t plan on stopping!

To those of you who lack support: I hear you. I see you. Keep fighting and hopefully answers come gently and swiftly for all of us. I hope we all continue to see our light at the end of the tunnel and reach it sooner, rather than later. Squeak on my friends!

Getty image by Tharakorn