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Putting Up With POTS

A Blog About Life With Chronic Illness

Disabled Work

Writer's picture: jdsantacrosejdsantacrose

I’ve been thinking a lot lately about disabled work. Disabled work is work that is done more often by disabled people or work that is uniquely relevant to the disabled experience. This doesn’t mean that other people never do this type of work. But I think it’s important to acknowledge the types of work that disabled people are uniquely capable of and to celebrate that labor.


While thinking about this topic I found myself minimizing it, thinking that all my disabled skills were learned. And anyone could learn these skills. Then I realized that engineering is also a learned skill and we don’t devalue that. Most skills are learned, this in no way invalidates the skill or the work being done.


As a disclaimer, I’m including those with chronic illness in with disabled people for the purposes of this post. There’s a good faith debate that can be had about the differences between these groups but that’s not what this post is about.


Pacing and resting are two things that our culture is not typically very good at. If you don’t think these count as work, consider how huge self care has become in the last decade or so. Tons of people have no idea how to get through life even for a few weeks or months on ¼ of their normal energy. That’s because it’s hard. It’s hard to figure out which things to put very limited energy towards to get the best outcomes. It’s hard to stop yourself from doing more than you should and then crashing as a result.


Disabled people have to learn to live with extreme limitations. Some are lifelong and some can last months or years. When we catch an acute illness our already limited energy can be cut down even further for a time. Sometimes we need to ask for help. But often we manage to get by with very little in the way of energy resources simply by prioritizing. This isn’t your average prioritizing where you see how much work you can do in 8 hours. I’m talking about deciding whether to shower or cook in a day since you know you can’t do both. Whether to go grocery shopping or do the dishes. Exercise or socialize.


These types of difficult choices are foreign to most able-bodied people. So when an illness or injury hits them and they don’t know how to prioritize those things they could learn from their disabled friends. Being disabled requires an incredible amount of efficiency for basic tasks because to do them any other way means giving up even more energy that you don’t have.


Resting is even harder than pacing. Think of a time when you have been recovering from an acute illness. Once you get past the initial phase where you just feel like total crap you start to get bored. You want to do things but whenever you do them you feel like you need to take a nap after. This typically only lasts for a day or two for healthy people. Now imagine you feel that way about basic tasks for the rest of your life. People with chronic illnesses have to rest more. It’s just part of it. But forcing yourself not to do things when you want to be doing them is incredibly hard. It takes a lot of self control. In other words, it takes a lot of work. Having the motivation to be doing a ton of things but not having the energy to do any of them is one of the most frustrating things I’ve ever experienced.


Another area where disabled people shine is in surviving when stuck at home and/or in isolation. This wasn’t something most people considered until COVID hit and lots more people than normal were staying home, some were isolating after exposure, and lots of people felt like they were going crazy. Disabled people were right there on the internet teaching the rest of the world how to cope. We knew how to stay in contact with family and friends virtually because we had been doing it for as long as the technology existed. We knew how to find hobbies and learn new skills without ever leaving our house. We knew how to get most of our needs delivered to our house to avoid going into stores. We had already done the work of learning all of that and we were right there teaching others when they found themselves in a new situation.


Disabled people become experts on how to do things within our limitations. We find ways to do our daily tasks like cleaning and cooking despite serious limitations. When a new person becomes disabled we are there to talk them through these techniques online or over the phone. We share coping strategies and tricks. We learn to cook mostly sitting down or how to clean in very small increments. We learn what hours of the day our brains work the best and utilize that knowledge to do intellectual work. We are constantly learning and adjusting and growing, because we have to. Life didn’t leave us any other good choices.


In a similar vein we know the ways to find community and socialize despite our restrictions. Disabled people create community with each other, often in unconventional ways. This type of community has really flourished in the internet age. There are thousands of online support groups. Some focus on specific disabilities, some are more broad. And these groups are often a lifeline for disabled folks, especially the ones who are new to living with disabilities. When someone first becomes ill or has newly been diagnosed there isn’t a lot of support for them in our traditional healthcare system. Particularly in the case of chronic illnesses, many doctors are not knowledgeable about coping skills, treatment options, or the latest ongoing research. This is where online support groups thrive.


Online support groups share tips and tricks of what has worked for individuals. We explain things to other people with our same conditions or similar conditions. In this way we all have access to the best explanations from doctors by virtue of the patient sharing that information with their peers. We regularly recommend products to each other that help, whether that be supplements, medical equipment, compression garments, heating/ice packs, books, electrolyte drinks, or anything else we find useful. There is no incentive to keep these things to ourselves so we share openly the things we have learned. It’s really quite beautiful. The only downside is you need to remember that what worked for others might not work for you and proceed with caution and thoughtfulness as you try new approaches.


We also find ways to accommodate disabilities for in person socialization. Sometimes that means asking another disabled person what they need to be comfortable and sometimes that means advocating for our own needs. Personally I struggle with gravity, so I bought a lawn chair that has a foot rest and can recline. I take it with me to social events so I can participate comfortably. It’s made a huge difference in my ability to attend outdoor gatherings. The disabled work here is twofold. On the one hand, I had to think about what my needs were and find some ways to meet those needs. On the other hand, carting my chair around everywhere I go is also work that I do to make events accessible. Often my friends will help by carrying my chair for me or intentionally making sure there are chairs available for me in situations when I might not have my chair.


Many disabled people also have eating restrictions we have to follow. In many cases our doctors don’t know exactly which diets will help us so the work of trying different dietary recommendations falls to us. When I was diagnosed with IBS my doctor didn’t know what diet to recommend for me. It seemed like everything I ate made me sick. I spent 5 years trying out different diets to see if anything would help. I did the mental work of learning about each of the diets I tried, I did the work of learning how to cook new and different foods, and I did the work of assessing how each diet affected my body. My experience is not an uncommon one in the disabled community.


One side effect of all the diets we have tried is that many disabled people are very good at adapting meals to other people's dietary needs. I know how to make something gluten free or lactose free because I’ve tried both of those diets for myself. I know how dangerous an allergy can be because I’ve experienced allergic reactions myself. I know how easy it can be to cross contaminate things because I’ve gotten sick from cross contamination myself. I even know which food items could be hiding allergens because I’ve had to learn about each of the diets I’ve tried in the past. And when other people are cooking for me I feel much more comfortable with another disabled person's cooking because I know they also are likely to know all those things. If I’m being honest sometimes I like the challenge of cooking for a group of people with various eating restrictions. It’s like a fun puzzle for me at this point.


This will probably sound more like play than work at first but I think learning how to do low energy activities is a form of disabled work. The main issue here is that there are lots of different ways an activity can be high energy, so it takes a discerning person to figure out activities that won’t overtax whatever needs to not be overtaxed. There are many different types of disability and chronic illness, many with myriad symptoms that can change over time (dynamic disabilities) and adjusting activity levels accordingly can be really hard work at times. For instance when my body is tired but my brain is doing okay, writing is a really good low energy activity for me. But there are times when my brain needs a rest. Those times it’s important for me to find other things to do. I might do some gentle stretching as a way to move my body while giving my brain a break. It also takes a lot of attention to notice when your body and brain are each getting tired. This goes back to pacing, but that work of paying attention to your limitations is not easy. I am constantly aware of what’s going on in my body so I can respond to any small problems that arise before they become huge problems. It takes a lot of focus.


Disabled people also become experts on risk assessment. This can look different for different people but disabled people are generally more aware than the general population about the risks in their environment. A person in a wheelchair is always paying attention to which buildings and doors are accessible to them. An immunocompromised person is aware of what settings are the most likely to spread infectious diseases. Someone with POTS will always be looking around for places to sit down. These things are important for that disabled person to pay attention to even if most people don’t notice them. Often when disabled people have some authority or planning roles they take steps to make events and spaces friendlier to other disabled people. None of these things are work done exclusively by disabled people, rather they are things done often by disabled people and things that are uniquely relevant to the disabled experience.


Disabled people often have to learn a lot of medical information in order to survive and get good care. I often have people ask me if I work in the medical field. In some ways I guess I do work in the medical field, but as a patient rather than a caregiver. All that I’ve learned about how bodies function and how mine doesn’t always function that same way is work. It’s learning that I can then apply in situations to keep my body functioning and to get the help I need from medical professionals.


We become laymen experts on things that healthy people normally don’t have to think about much. We learn about nutrition so that when our conditions cause us to not absorb nutrients well we know how to add more of those nutrients into our diets. We all know how to get ourselves hydrated quickly and efficiently (unless our particular medical problems make that impossible, in which case we know where to go to get IV fluids). Many of us are very good at first aid, partly because we have had to deal with the things that have happened to us and partly because we usually have a pharmacy in our bags at all times. We know all the different options for pain management, whether those be over the counter meds, prescription meds of various classes, topical creams, or when to use ice and heat most effectively. Many of us are knowledgeable about different kinds of braces that can be used for injuries and we all know at least a few physical therapy exercises. Basically we have learned to handle the mild things on our own because if we didn’t we’d spend all our time at doctor’s offices or the ER. That gives us a vast store of knowledge that those around us can benefit from when they are facing mild medical issues. In other words, that is work we do, first for ourselves but then later for the benefit of those we care about.


Disabled people also tend to be good at research. There’s a certain skill involved in sorting through what medical advice on the internet is trustworthy and what isn’t. Disabled people learn by trial and error or by talking with their doctors about these topics which things to give credence to. We put this knowledge to use in all the ways we practice experiments on ourselves. Unfortunately there are often no approved treatments for chronic conditions. POTS is a perfect example. The FDA has never approved a treatment for POTS but it allows “off label” treatments for individual symptoms. Over the years doctors have found certain medications that tend to work better or worse for POTS patients but it’s still down to trying medications to see if they work and then making adjustments on an individual basis. This can take years for a patient and their doctor to try enough medications to find some that help improve the patient’s quality of life. All this experimenting is work we do. We try a new medication that may or may not help us, we assess side effects, we assess how much it’s helping, we try to decide if the help is worth the side effects, and then if we decide the drug isn’t right for us we have to start the whole process again.


That’s just for the prescription options. At the same time disabled people are often having to research new supplements, find reputable companies to buy them from, and follow the same steps outlined above for each new supplement they try. To make matters worse, we often get pushback or even scolded by doctors for trying things like supplements or changing a medication without checking with them first. If I checked every medication change I made with every doctor I see it would take months and I would annoy the hell out of my doctors. I probably have a dozen or more doctors I see somewhat regularly. So personally I do the best I can to talk to the doctors whose specialty is the most relevant to whatever change I’m about to make and then hope for the best from there.


While doing all this research and tracking disabled people also have to find ways to learn that work for their specific sets of limitations. As an example I have frequent migraines that are made worse by screens. I’ve experimented with E-ink technology for reading online during a migraine attack. I’ve also utilized libraries and have a strong preference for physical books due to this limitation. I also know that due to my POTS I will not learn things as well if I’m upright when I learn them. I can’t tell you how impossible it is to remember something as simple as someone’s name if I’m standing when you tell it to me. If I’m sitting with my feet up then it’s usually no problem to remember. All due to the fact that when I’m upright I’m simply not getting enough oxygen to my brain. Other disabled folks might have to learn things at particular times of day or in particular situations in order to retain the information. Everyone does this to some extent in their lives. We all try to figure out the ways we learn best and utilize those. Disabled people simply have more issues to work through in order to learn effectively. For those still in school this can be a huge barrier to success if the schools are not receptive to the disabled student’s needs.


Another area where disabled people tend to excel is planning for uncertainty. We are the ones who are always prepared for whatever might happen. We’ve spent our lives having things go wrong in surprising ways and we have learned from each of those experiences. We also know that we can’t possibly be prepared for every eventuality so we do our best to prepare and then live with the uncertainty after that. NASA has a habit of calling their plans “plans from which to deviate.” That is how we approach plans made. Some people struggle with this more than others but it is the direction we are all working towards.


My last example of disabled work is the (amateur) mental health work we do. This can happen internally in the ways we take care of our own mental health or externally when we check in on each other and offer our care and support. Not every disabled person has spent a lot of time on their internal mental health but many have. The process of coming to terms with and learning to live with chronic illnesses or disabilities forces us into a grief process. We essentially have to grieve the life we were expecting to live and then we have to build a new life for ourselves with different rules. The different rules are the ways our chronic illnesses or disabilities change how we interact with the world. It is an ongoing process of remaking ourselves and creating a new and more inclusive life. It’s easy to get discouraged in this process but building a fulfilling disabled life is abundantly possible and it is worth striving for.


Not only do we look out for our own mental health but we also are often checking in on each other. We share mental health strategies and help friends stay grounded when life gets hard. We check in with our caregivers to see how they are doing and when they are overwhelmed we reach out and ask for help from other sources. This is all part of the work we do as disabled people for ourselves and for those around us.


I’m sure there are myriad other examples of disabled work that I haven’t thought about or written about here. I think this work should be noticed and celebrated. I think both disabled and abled folks alike should acknowledge and applaud these efforts. By doing this we can encourage each other in whatever type of work we do. And that is a worthwhile and lovely thing.


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