Truly Invisible

We, the collective 'we'  of Spoonie-dom, speak a lot about Invisible Disease; the illnesses that cannot be perceived by a cursory glance. These illnesses are umderneath the surface and often go hand in hand with the dreaded 'but you don't look sick' comments and the general distrust that comes with it. 

However, many of the illnesses that fall within that umbrella, especially once officially diagnosed, have some kind of specific evidence to back it up. 

For instance, sure you can't just notice inflamed intestines by looking at someone, but the pathology in their last colonoscopy would show inflammation or their bloodwork may show something a little off, like increased inflammatory markers. Many diseases are difficult to see but have medical science to back it up - like abnormal bloodwork, CT scans, MRIs, ultrasounds, biopsies, etc... 

But what about the truly invisible diseases? 

So far as we know, science has yet to distinguish any particular visible evidence (even under a microscope) to detect and definitively diagnose Depression. It is an illness of the mind. There is no blood test that says "yes, you 100% have Schizophrenia", or a CT scan that shows a blip that can only characterize Bipolar Disorder, for example. We can't just take a deeper look and know exactly what mental disorder someone may be struggling with, and we can't physically see it anywhere (at least not right now). So how do people cope with truly invisible diseases? How much of their time is spent just trying to convince health professionals that something is seriously wrong? 

Take a minute and think about how to explain a complex emotion to someone who can understand the words but who cannot empathize. Take grief, for example. There are a million ways that people have attempted to capture the all-encompassing feeling of true grief in words. Poetry/music/prose - for hundreds of years it all touches on this complex emotion. Unfortunately though, while most people have a general idea of the feeling, not one person will be able to truly empathize until they, too, have experienced it. We can think logically and we can try to connect it to our own lived experiences, but until we have legitimately and desperately grieved, we kind of don't have a clue. 

The same goes for these truly invisible diseases. We cannot physically see the scope of the damage, we cannot appropriately empathize. We are ill-equipped to fully grasp mental illness, unless we have it ourselves. And even then, every single illness (of any type) will be different and unique to every individual. 

So how do we help? 

Some tips:

1. Never assume any medical status based on how someone looks. 

2. If we cannot offer empathy, it's validitation and effort that's most important. 

3. Try not to be dismissive of another person's experience regardless of our own feelings and internal thoughts. 

4. Remember that it's not necessary to sit and analyze every single thing, nor is it necessary to put forth unsolicited advice or 'fixes'. Sometimes it's better to just be a calming presence. 

5. Remember that trying to navigate an entirely invisible disease is exhausting and soul-depleting. 

Spoonie S.A.F.A.RI

 

I explain what this is and how it relates in this video. 

Essentially, it's the journey that every spoonie undertakes after developing new, unsettling, symptoms. 

Sometimes we're lucky enough to only experience the first few stages, but most of the time we get the entire S.A.F.A.RI, whether we want to or not. Then, afterwards, we need to figure out a plan on how we're supposed to deal with the results of investigation. 

Now here's a question: 

During this kind of journey, at what point do you feel the most anxiety?? 

My personal anxiety comes the worst when I've realized that it's likely a permanent change to my normal existence but when we haven't figured out exactly what it is. Once the symptom is evidently chronic, I want to know what it is, what may have caused it, and how best to deal with it. I want a diagnosis so that I can move forward, while also ensuring that I am not unwittingly making things worse. I also have found (the hard way), that sometimes people don't take you or your symptoms seriously without an official diagnosis. 

Other people feel more anxiety after the diagnosis, because that's when it seems to make it real. It's easier to ignore something if there isn't an official name to it. Also, sometimes once a diagnosis is reached, the level of care and support can be reduced - you're no longer a puzzle to be solved. 

Where does your anxiety come from when you experience new symptoms? 

General Medical Update

Here is the rundown and update as of Feb 2025. 

I am currently 38 years old, turning 39 this August. 

Diagnoses & Chronic Conditions: 

Crohn's Disease

I was first diagnosed in 2001 with Ulcerative Colitis, then had the colectomy and a temporary ileostomy in 2003 before getting an internal J-pouch in 2004. Then I developed Chronic Pouchitis (2004) and was diagnosed with Crohn's Disease by 2006. I am on cyclic antibiotic therapy as well as an immunosuppressant. Still symptomatic. 

Hashimoto's Thyroiditis

This was diagnosed in 2006. I have taken a thyroid medication since being diagnosed, although the dosage changes fairly regularly.

Migraines

Diagnosed in 2007. I am on some prophylactic medication and have a few forms of emergent medications, as well as receiving Botox and sometimes nerve blocks. I get bad ones that require my emergent medications a few times a month. 

Macular Degeneration, Geographic Atrophy, Double Vision, and Cataracts

I was diagnosed in 2007 with an early onset of macular degeneration and placed on an eye specific multivitamin. In 2023 I was diagnosed with Geographic Atrophy and they found very early Cataracts. Double Vision related to the GA was also diagnosed in 2023, which now makes reading quite difficult and painful if it's for more than a few minutes at a time. I also feel anxiety driving at night, so I avoid it. 

Chronic Pelvic Pain

The initial diagnosis was Myofascial Pain Disorder in 2007. I had severe pelvic pain for years prior to this and tried multiple therapies and medications. I eventually had a hysterectomy and bilateral oopherectomy in 2017, which alleviated many of my symptoms. 

Psoriasis

Diagnosed in 2008, severe enough to require corticosteroid creams all over my body and light therapy. This has gone into remission over the last several years with only small flare-ups, usually on my scalp and around my ears. 

Hyperhidrosis

In 2008 I had the sweat glands removed in my armpits to combat this excessive sweating, likely caused or exacerbated by my thyroid issues. I have not had this problem (other than with medication side effects) since that surgery. 

Non-Obstructive Sleep Apnea

This was diagnosed in 2009 after sleep studies. I was told that, essentially, my brain sometimes forgets to tell my lungs to breathe. It is not often and is usually only exacerbated when my health is extremely poor. 

Nighttime Teeth Grinding

I don't know exactly when the teeth grinding started, but it was early in my health history - between 2001-2004. Another symptom that is exacerbated when my health is particularly poor. It has caused Mandibular Tori to form and the wearing down of some of my teeth. It also contributes to migraines. I tried a mouthguard for a few years. I now get Botox injected into my jaw to help with these symptoms when I get Botox for my migraines. 

Ankylosing Spondylitis

This was diagnosed in 2012. Walking became horribly painful. I used a cane and eventually got around using a wheelchair for a few years. In 2020 I had my first nerve ablation procedure and that has helped immensely - I rarely require the wheelchair anymore. I now undergo the ablation procedures onve a year, which continues to help. I have tried multiple biologics for this disease but I have been intolerant to all of them. 

AVM in My Lung

In 2013 they found an AVM in my lung while looking for other issues. This has not been an issue as it does not lead to any major vessel. Incidental finding, but could cause potential issues at some point, we just don't know. 

Raynaud's

Diagnosed in 2014. Causes discomfort but no major issues. 

Angioedema

Diagnosed with some form of angioedema in 2015. At first they thought Bradykinin-Associated angioedema, then they thought Hereditary Angioedema Type 3, then Hereditary Angioedema Type 1, then genetic testing confirmed it is for sure not type 1. So my current official diagnosis is Idiopathic Angioedema and currently waiting for genetic testing to check for HAE Type 3. Currently on a fantastic prophylactic medication and two different rescue medications for acute attacks. 

Gallbladder Failure

My gallbladder was removed in 2019. It just didn't really work anymore. They found gallstones and sludge and tested its function and it had likely been failing for a while. My constant nausea improved greatly after this surgery. 

Costochondritis

Inflammation in my ribs (well, the cartilage around my ribs) diagnosed in 2024, often going hand in hand with Ankylosing Spondylitis. The aching pain is always there, fairly minimal, but flares up easily. 

Otosclerosis

I was diagnosed with Labyrinthitis followed by Tinnitus and mild hearing loss in my left ear that all came on suddenly in 2023. By mid-2024 I got a hearing aid for the left ear because the hearing loss had gotten worse. An ENT diagnosed Otosclerosis in 2025. 

Obviously this is a very condensed updated overview of the chronic conditions that I have that require constant monitoring. 

Chronic Illness is ever-evolving and the symptoms are a rollercoaster with times of momentary stability and brutal flare-ups. 

There have been many years of nonstop testing, of suspected diagnoses and guesses that were - thankfully - all incorrect (one year doctors thought I had Sjögren's, another year a doctor believed I had a pituitary tumour, another year I was tested for Diabetes, another year I was tested for HIV, I have been tested for Lupus on many occasions, I've been tested for different cancers, for MS, for surprise pregnancy, and my case has been sent to specialists in other provinces and countries. My doctors have even consulted with the NIH about my case in the past). 

As of today, we have most answers for many of the issues I face. I am on effective medications, I undergo effective procedures to help with symptoms, I have great care from my physicians, I am on a good routine, and have a bit of stability. 

In my personal life, I am ecstatically married to a perpetually supportive and outstanding husband, I enjoy various low-impact hobbies, we have a wonderful dog who keeps life interesting, and I am surrounded by true and cherished lifelong friendships. 

I cannot work but I do continue to find purpose, and happiness, in life.