Rejecting My Diagnoses: Am I Really a Spoonie?

I have ADHD, PTSD, and anxiety. I also have chronic migraines, IBS, food allergies, and I’ve been getting poked and prodded more than normal recently because my physical symptoms may or may not have changed in a way that warrants an additional diagnosis (we shall see). Thinking too hard about myself as a “spoonie” – or sometimes trying to practice self-care in the ways recommended – often embarrasses me and triggers RSD. I’m not ashamed of any of these diagnoses themselves, per se. (I am especially not ashamed of the idea that people with mental health challenges or learning disabilities are “spoonies.” It is a huge pet peeve of mine when people say that people with these challenges aren’t “spoonies.” Just no, readers. Mental health counts on this blog!) I know that invisible illnesses are not an indication there is something wrong with me. I know they are real, even if others don’t always accept what they cannot see.

However, if I’m honest, I’m ashamed to admit to myself that I have most of them because I don’t feel like I “have it bad enough” in the severity of any of them to justify when one or more of these diagnoses causes complications or a bad day. I am the staunchest advocate for invisible illnesses in general, but I know I still don’t always know how to apply that advocacy to myself. To someone – anyone – else, yes, absolutely. Just not me.

I know this because it creates a painful dichotomy wherein I wish I could talk to others with the same diagnoses in person about my struggles – people who have been there and could offer peer support – but I’m too embarrassed. Someone who has it worse can do whatever she needs to do to manage her spoonie-ness. Someone like me, who generally isn’t ill enough (or just won’t admit that she is ill enough) to take time off work and still considers herself ambitious, can’t use her conditions as an excuse, right?

I have been encouraged to attend a supportive peer yoga group by my therapist. I love yoga, and I do not enjoy when typical group yoga instructors come over and move my body around, in front of everyone in the class, while showing the class publicly all the ways I’m not good at yoga. Trauma yoga explicitly allows for group participation and feedback, without the touch or public shaming for the less adept folks. Yet, I’ve never attended any of their meetings. I still just take my tablet and my online subscription to The Yoga Collective to my complex’s yoga studio and practice by myself. I read the public bios of group leaders, see their inspiring stories of overcoming adversity meant to make new members feel they can heal too, and I think to myself, “My experience surely wasn’t that bad.” I picture myself finally daring to share my own history outside of a 1:1 therapeutic experience, and I immediately imagine having everyone in the group ask me how that could possibly have been severe enough to warrant a PTSD diagnosis.

I know this because I waited almost ten years to seek medical treatment for the painful and socially embarrassing gastrointestinal symptoms of IBS. I know this because, when I finally did seek treatment, I initially hung my head and nodded when doctors dismissed my symptoms as “all in my head.” I should have advocated for myself sooner. My experience was, sadly, more the norm than the exception. When I finally did speak up for myself, I learned that I also have food allergies that are contributing to my IBS, and that food allergies don’t always present as anaphylactic shock. Yes, I have some allergies that are severe enough to be life-threatening, but the ones that cause most of my daily discomfort are the more moderate ones to more commonly found ingredients that express as nausea, vomiting, non-specific joint swelling, diarrhea and dizziness.

I know this because I still hesitated when I wrote chronic in front of migraines in the first paragraph of this post. I have finally been experiencing a period of stability and relatively good treatment control, and that somehow makes me feel like I can no longer claim the diagnosis. Because I am not currently experiencing migraines every day, I immediately invalidate my own previous experience. I downplay the memories of when it really was that bad, or I convince myself that because I muddled through work even during the worst years of truly chronic migraine, I don’t deserve to talk about it.

I know this because I am exhausted, truly exhausted, right now in a way that is new for me, even with my other diagnoses. I know this because things are hurting and/or swelling without any of the known triggers, and much worse than before. Yet, in the month until I see a specialist about a flag on one of my inflammation markers, I know I will spend more time worrying about whether this new doctor will also say it’s “all in my head” than I will worrying about the implications of a new diagnosis. I don’t want there to be something else wrong – the rest are plenty – but being told it’s “all in my head” would be so embarrassing that I can’t muster any additional mental energy to worry about the flip side.

I know this because, while others gravitate towards the informal high-functioning description for anxiety they can work through and (mostly) hide when they need to, I keep wondering if I’m really high-functioning – or just don’t actually have severe enough symptoms for a diagnosis at all. Am I just excusing my own shortcomings if I try to practice self-compassion when I forget an important event or rudely interrupt someone? When I am a zombie after being up all night? When I fidget and babble through a presentation at work? When a week of actually doing well at work still means I must sleep for most (okay, all) of the weekend to even partially recharge my physical and mental batteries?

Instead of taking it for the compliment it is when someone tells me how strong I am for maintaining a demanding career despite physical and mental health challenges, my mental RSD-voice tells me “you probably just don’t have it as bad as they think when they hear those diagnoses.”

I don’t want to doubt that I deserve the same compassion I would offer anyone else with my diagnoses. I want to reach the point where I don’t feel like a pretender for telling myself I deserve to practice self-care. I want to be able to explain (not excuse, but explain) when I struggle at work or at home because of one or more of these diagnoses, and I want to feel I deserve to take it easy on the bad days.

Most of all, I no longer want to be ashamed to admit I have symptoms severe enough to warrant these diagnoses. I want to be able to talk about not having enough spoons – without looking around to see if any “real” spoonie is going to call me out for daring to apply the terminology to someone like myself. There’s nothing wrong with people who have invisible illnesses, and I want to stop doubting that I also belong in that group of people who are okay as they are. I want to believe I deserve to own my diagnoses, so that I can perhaps finally and truly believe there isn’t something wrong with me, either.

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.


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