My History With Disability

Before We Get Into It, Let’s Define Disability

Canada’s Federal definition of disability is as follows:

                “Disability is a complex phenomenon, reflecting an interaction between features of a person's body and mind and features of the society in which they live. A disability can occur at any time in a person's life; some people are born with a disability, while others develop a disability later in life. It can be permanent, temporary or episodic. Disability can steadily worsen, remain the same, or improve. It can be very mild to very severe. It can be the cause, as well as the result, of disease, illness, injury, or substance abuse.” - https://www.canada.ca/en/employment-social-development/programs/disability/arc/reference-guide.html

The World Health Organization goes further to say:

                “Disability is part of being human. Almost everyone will temporarily or permanently experience disability at some point in their life. …

Disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.

A person’s environment has a huge effect on the experience and extent of disability. Inaccessible environments create barriers that often hinder the full and effective participation of persons with disabilities in society on an equal basis with others.” - https://www.who.int/health-topics/disability#tab=tab_1

Through these definitions we can agree on a few key points:

• Disability is complex, encompassing a wide range of severity and presentation; within disabled people as a community, within people with the same conditions or experiences, as well as within a single disabled person.
• Disability is not the illness, disease, or condition a person has, rather it is the difficulties arising from limitations faced by a person experiencing illness(es), disease(s), and/or condition(s).
• Disability is an experience which can only be accurately reflected through the personal expression of each individual disabled person.

Before I Knew I Was Disabled

In retrospect, I consider myself to have been disabled from birth.  With symptoms such as pre-syncope (essentially pre-fainting) and frequent indigestion being reported by my caregivers from birth into kindergarten, I have no doubt these were the warning signs of the POTS and IBS diagnoses I would receive as an adult.

From my own memory, almost fainting was a semi-regular occurrence for me through elementary and middle school. All my gym teachers gave me advice to recover from these episodes and were aware I may need time outs to feel stable throughout class. But standing during church services was the worst offender. The stand, sit, stand, sit, stand, sit, pattern used throughout an hour and a half morning service is essentially a textbook trigger for POTS-related syncope. I was granted the allowance to sit “when I needed to”, yet I was still side-eyed by adults and told to try harder if I did so “too often”. This attitude of offering grace for my difficulties, but only up to a certain point, was reflected by my family and a variety of communities up to and inclusive of my conditions becoming more obviously disabling.

When I entered employment, I found the physical energy demands to be extremely high for my capabilities. Standing and walking for 8 hours per day, 5-6 days per week, my body struggled to keep up. At my first essentially full time job, I resorted to stocking and cleaning while kneeling on the floor to reserve my energy. At my second full time job, I my first “vertigo” episode, which I now believe was actually my first symptomatic crash associated with adrenal fatigue. That time I couldn't walk around for a week. I continued to experience “vertigo” episodes around the same few weeks in following years, each time worsening in length and intensity.

My digestive issues came and went throughout my life. There were periods of time lasting months where I could barely eat anything due to nausea, abdominal discomfort, and other digestive symptoms. Once or twice per year since teen-hood I would experience a “bathroom episode”, which I can now identify as IBS episodes. Through the latter years of high school, I struggled to eat anything during school hours as stress and mental illness became overwhelming for me. This would be reflected through my employed years as well. No matter how hard I tried to eat regularly, timed expectations and authoritative structures hindered both my caloric and nutrient intake.

The First Flares

As my energy capacities grew lower, my digestive system grew more sensitive and was the first to give way entirely. October 2015, I became undeniably disabled by my IBS symptoms and unable to eat most foods without unreasonable amounts of digestive pain. The pain made eating difficult, but it also limited my mobility. I couldn’t stand up straight, stay upright for too long, or carry much anymore, and my stamina had sharply decreased. Over the following six months, I lost 50lbs. The only medical intervention offered to me at this time were prescription ant-acids, which did nothing to help my symptoms or relieve my pain.

September 2016, I lost employment due to the intensity and frequency of the black outs and syncope I was experiencing during work hours. Even seated at a desk did not relieve my symptoms. This is when POTS began to more fully express itself. In the following months I was off work, I put in a lot of effort to better my diet, improve my physical stamina and cardio, and went through a program to help with stress management. At first, my efforts appeared to be working. I could walk longer distances again, I didn’t need to use my cane as often, and I began to wonder if I would be getting back to employment fairly soon after all.

July 1, 2017, I lost the majority of my mobility in the span of a few hours. Starting the day as we always did, with a long walk to get breakfast and begin our errands, I was suddenly unable to remain standing. This wasn’t the same as pre-syncope, when my eye-sight goes black and the blood whooshes out of my head. This was lead in my blood, sick to my stomach, unable to hold myself up exhaustion. I believe this is the moment adrenal fatigue completely took over my body. Going into full flare and triggering flares in POTS and IBS symptoms, I was left bedridden for 2-3 years, and remained without a wheelchair to access the outside world for the first 8 months. These were some of the darkest months of my life.

But I did not spend this time idle. Though there were countless hours spent laying in recovery positions re-watching King of the Hill, there were also countless hours of documenting my symptoms and researching possible conditions and treatments I could try. In my opinion, it wasn’t difficult to identify the issues I was facing. The doctors I saw at the time either did not believe my symptoms were as debilitating as I experienced them to be, or did not care about the suffering I endured due to their passive treatment. As I was not content to sit and wait for them to wake up, I went ahead with the lifestyle changes I felt would be necessary.

What I Know Now

Irritable Bowel Syndrome – IBS is a common digestive disorder characterized by a variety of digestive symptoms in the absence of a more specific digestive condition. https://www.healthline.com/health/irritable-bowel-syndrome#what-is-ibs

My experience with IBS includes persistent cramping and abdominal pain, excessive gas, nausea, constipation, and diarrhea. At its worst, I have been wailing and crying in the bathroom, and to avoid such serious episodes I must be quite careful. Making sure I drink plenty of water, get at least 6 hours of sleep, and engage with stress reduction practices lays the foundation for improving my digestive health. The foods I must avoid at all costs include some dairy products, highly processed meat products, and some pantry foods such as Hamburger Helper and Knorr's Sidekicks. I am only able to tolerate spicy foods as long as they are healthy and I am eating other non-spicy meals that day as well. Oily or fried foods, wheat products, and sugary foods can be consumed in small amounts among otherwise healthy foods.

The medications I have found which work for my IBS include psyllium husk and cannabis. Psyllium husk is a fiber supplement which I think could be beneficial for a lot of people who may not get enough fiber in their diet. The difference is phenomenal. Personally, I tend to have my BM first thing in the morning so I prefer to take psyllium before bed or with my last meal of the day. Taking psyllium every day also reminds me to drink enough water, as this supplement can backfire and cause an issue if one isn’t hydrating properly. My consistent use of cannabis is to treat one symptom specifically: Tenesmus, or the persistent sensation of needing to poop. I have not yet come across any other treatments which work to soothe this unusual and distracting symptom. https://www.healthline.com/health/tenesmus#What-is-tenesmus

Postural Orthostatic Tachycardia Syndrome – POTS is, primarily, a cardiovascular disorder characterized by a failure in the ANS (Autonomic Nervous System) to properly regulate blood pressure and heart rate when changing positions. https://www.healthline.com/health/pots-syndrome#symptoms

POTS significantly influenced my childhood and development without anyone realizing. I didn’t just choose not to participate with other kids, I was genuinely too worn out. I didn’t have the same stamina my peers had. I was made fun of by peers and adults alike for the ways I moved and positioned my body to prevent pre-syncope. Dance class was too hard. Long walks through the mall and standing in long lines triggered symptoms, so I opted out. Every time I pushed myself out of my comfort zone, I was met with a surge of worsened symptoms I didn’t usually face day to day. My social opportunities diminished, and I convinced myself I liked it that way.

Now I revolve my life around managing and preventing POTS symptoms. From daily breath work, 8 hours minimum sleep, water intake, eating appropriately, taking supplements, stress reduction practices, tracking activity levels, and maintaining an environment acceptable for healing and growth, the work is endless. Medication has not been effective for managing my cardiovascular symptoms, but a complex multi-vitamin and minimum dose of 1000mg Omega 3s daily have helped overall. This work also includes continuing to seek out new and appropriate treatments to add to my regimen when I feel able to add to it.

Chronic Fatigue (Syndrome) – CFS is a systemic disorder characterized by persistent, disabling fatigue which cannot be cured through bed rest. https://www.healthline.com/health/chronic-fatigue-syndrome#symptoms

One of the unique features of CFS is Post-Exertional Malaise (PEM), an acute state of fatigue brought on as a result of energy expended, whether physical, mental, emotional, or otherwise. PEM typically occurs within 48 hours after the energy expenditure, and can last for 24 hours or longer. In my experience, PEM intensity can be classed by the amount of recovery time to return to my baseline. A minor episode requires two 9+ hour nights and one day of full bed rest, a moderate episode requires a weeks’ worth of 9+ hour nights and several days of full bed rest, and a severe episode requires multiple weeks of intensive rest during both nights and days. I would consider a severe episode of PEM to be a flare in my case.

In addition to the lifestyle changes I detailed as my treatments for both IBS and POTS, I practice pacing to reduce effects of chronic fatigue and the resulting PEM. Even when I feel strong enough and energetic enough to perform activities I would typically find difficult, I can expect to suffer from PEM later that day or the following days. For me, PEM often feels like the beginning of a cold/flu; my body feels heavy and weak, my throat gets sore, my nose feels congested, my head is foggy, and the only thing to do is rest. I can distinguish PEM from a cold/flu because most of the symptoms dissipate quickly with a few hours to a day of rest, even if the severity of fatigue persists. With cold/flus, all the symptoms typically worsen through the first day, regardless of rest or recovery efforts. https://www.actionforme.org.uk/get-information/managing-your-symptoms/pacing-and-energy-management/

Adrenal Fatigue Syndrome - AFS is the non-Addison’s form of adrenal dysfunction, a condition where the body’s stress response cannot keep up with life’s chronic stressors. https://www.drlamcoaching.com/adrenal-fatigue/

I recently discovered adrenal fatigue as a probable underlying cause for the pattern of worsening illnesses throughout my life. The typical progression of this condition is familiar to me and able to account for the inconsistent development of my symptoms and the development/worsening of several dysautonomic disorders. The consistent stress I lived with from childhood into adulthood put me at a high risk for developing adrenal fatigue, and much of the advice offered as treatment I have already implemented through trial and error in the past few years. I am looking forward to the potential for discovering additionally effective treatments and lifestyle changes to improve my quality of life in the coming years. https://www.drlamcoaching.com/adrenal-fatigue/concepts/4-stages-of-adrenal-fatigue/

Disability, Gratitude, and Pride

After years of research and various lifestyle changes, this summer I gained the ability to walk independently some of the time. While I still use mobility aids during many outings, having the option to walk independently even some of the time fills me with gratitude and pride. I have been able to meet this goal through the consistent support of my partners to meet my day to day needs. They have been generous with their time, effort, and resources to ensure my dietary needs are being met, my energy can be preserved for recovery efforts, and to escort me safely whenever I leave the home.

While my symptoms and suffering have improved drastically over the past few years, my disability status has not made the same leap as I must maintain certain limits to retain the wellness I’ve achieved. Every so often, I will test these limits. Sometimes I do this through a new exercise routine, sometimes through a physically demanding outing, or else through some other interesting activity. Most of the time I am reminded of why I have the limit set.

Occasionally, I surprise myself with how much I’ve grown and gained. However, in every instance where I’ve made ground, there is a necessary support I can credit with assisting me in those gains. If that support were removed, I would very likely lose wellness due to the nature of how my disabled body works. This is a big reason why, even when I sometimes appear quite able, I continue to identify as disabled. Another significant reason is due to how severe my symptoms can be on bad days or during flares. I am no longer chronically bedridden, but it only takes one bad day, getting the cold/flu, or triggering PEM to send me back to that state for an undetermined period of time.

I am immensely proud of the work I’ve done and the health I’ve gained. But there is a lot of danger in discrediting the critical supports necessary for my wellness to continue and potentially grow. I want to be able to share my joy and excitement about feeling as good as I do, while continuing to acknowledge the limitations which define my day to day life. Sometimes it feels like, as a disabled person, I have to be purely optimistic or sorely immersed in the difficulties, but the reality is always both. Life is good and any health I have is a blessing. Still, inaccessibility remains oppressive, healthcare remains ableist, and my body continues to limit me.

Almost everyone has or will experience a temporary or permanent disability at some point in their life. Coming to understand this has led me to feel deeply lonely. You might expect this fact to cause a disabled person to feel less alone, as it implies there must be so many people who can relate to the experience. However, this caused me to think about how many people I have known in my life who reject the term “disabled” despite living with limitations, those who reject accommodations which could improve their life and wellness, and who have ideologically and politically separated themselves from a disability community with which they share important commonalities, all due to ableism. https://themighty.com/topic/disability/internalized-ableism-experiences/

It saddens me to realize people I could relate to now would rather not have me point that out. It saddens me to realize people who could benefit from similar changes to those I’ve made or supports I’ve found would rather not even know about them because these options are associated with disability. It saddens me to realize how ableist I have been, and how I was conditioned to feel the same way and do the same things before I educated myself. Now I am proudly disabled, not because being disabled is anything to be proud about, but because so many people believe it is something to be shameful of. And I know firsthand the consequences of living in that shame.