People with Chronic Illness / Traumatic Brain Injuries (TBIs)

Liaisons:  VT Center for Independent Living (VCIL), Brain Injury Association of VT
The following summarized comments are the opinions and observations of community members with chronic illnesses or TBIs in the Summer of 2020.

Environment (Air/Water/Waste/Outdoor Access)

  • Concern over construction impacts on air quality, demolition of houses containing asbestos.  Questioning whether the EPA or DEC are monitoring the dust in the air from construction and demolition sites, especially during the pandemic:

“And the destruction is continued now, since the pandemic has gone down in Vermont, as far as we know, where have the rules been relaxed.”

  • Participants questioned whether there was adequate information available to them on pesticides being sprayed in their area or notification on whether there is danger related to a construction/demolition site and how far to stay away from the area so as to not exacerbate health issues.
  • People with TBIs report headaches and nausea when surrounded by noise and pollution:

“If there’s paving, the smell gets to me and makes me sick. If there’s any kind of construction going on, the noise is horrific and causes headaches. So if anybody with a brain injury is living around that, imagine what they have to deal with.”

  • People with chronic illnesses are also disproportionately affected by effects of climate change:

“Our illnesses get worse in the heat. We know the health effects of climate change; the increase in illness, of temperature itself, the natural disasters that cause mold.”

  • People with TBIs can also struggle with regulation of body temperature. When windows must be closed due to agricultural or construction odors in the neighborhood, participants without air conditioning reported having to deal with worsening symptoms.
  • Major concern was expressed for the unknown effects of toxic chemicals in our lived environment.  Participants reported a heightened sensitivity to chemicals, mold, building materials, residual pesticides, and indoor air quality:

“We stopped having any control over the millions of toxins that we’re ingesting every day and drinking, and it’s like we don’t even know what’s in our environment. And my theory is that there are so many more young people sick because of all of those toxins. And I just feel like it’s our immune systems acknowledging that there are things in our bodies that should not be there.”

  • Cluster of diseases is becoming more prevalent among young female Vermonters.

“I have talked to a couple of doctors who feel like there’s some sort of weird pocket of cases in Vermont. And they don’t know whether it’s the prevalence of things like Lyme or mold or whatever environmental factors might be causing this condition. These have been mostly young female bodied people in Vermont. And again, we don’t know the prevalence elsewhere. So it might be this is popping up everywhere and just we have to have a network in Vermont to identify each other. But it’s been really interesting.”

Economy (Jobs/Safety/Education)

  • People with TBIs and chronic illness described a wide array of challenges with employment.  
    • Some had to quit their jobs due to increased risk during pandemic:

“In my particular case now, I’ve lost my job not because of them, but because of me, because of my medical issues. Too risky for me to go back to school now in this situation. So I had to let them know that I couldn’t go back.”

  • Employment is especially difficult to maintain with chronic illness and TBIs in part due to unpredictability of symptoms:

“I just know I couldn’t do the job that I used to do. I couldn’t even come close to doing it. And so I lost that. My short term memory is terrible.”

  • Flexible hours are necessary for reentry into the workforce. 
    • TBIs can affect attention span and frequent breaks are necessary.  Participants who had the option to work from home expressed how important time to adjust was for them after their doctor gave them the approval to go back to work:

“My doctor said ‘I’m going to give you permission to go back and work for five hours.’ Next thing, it’ll be ten. It’ll be twenty. Candidly, as I’ve had time to adjust, it’s the best thing that ever happened to me. For me it was somewhat of a blessing because it slowed me way down. It allowed me to figure out what I could do with my TBI, what I can’t do.” 

  • Participant with chronic illness described the importance of flexible schedules as a critical accommodation akin to ensuring wheelchair accessibility:

“I’ve had a number of employers since finding a diagnosis and there has been a wide range and ability or willingness to accommodate.  In particular, for me, having some flexibility in schedule is a whole other area of ADA compliance. For example, I’m sick almost every morning. I also get sick pretty much every time I eat for about half an hour afterwards. If I’m able to lay down while I eat and put my feet up for half an hour afterwards, I feel significantly better. So being able to communicate that to employers and have it not be weird is really important.”

  • Cleaning supplies and building materials containing certain chemicals can trigger migraines and nausea, making work impossible for those suffering from underlying health issues.  Employers can be more accommodating by using unscented soaps, limiting perfume, and utilizing natural cleaning supplies, and keeping open dialogue with employees:

“It often takes really small tweaks that can make a massive impact. And a lot of employers are just very hesitant to do that.”

  • Individuals working at schools are confronted with a difficult choice of whether to return. One participant described feeling unsafe to the point of experiencing paralyzing fear:

“There are times when, for example, I’m trapped in the classroom that feels unsafe to me. And then a student takes off their mask, and starts shouting across the room. I’m in such fight or flight mode that it’s incredibly difficult to even say the words, can you please put your mask on?”

Food & Transportation

  • During the pandemic, the early “safer” hours at grocery stores for elderly and people with health issues do not make safe shopping more accessible for many:

“For some of us with TBI who have sleep issues, being at stores between seven and nine might not work because we might not be awake yet.”

  • Many health & wellbeing benefits from community gardens. Many reported increased sharing of food and growing local produce. For example, East Valley Community Group decided to use a piece of land owned by a member of the group to grow food for the community.  They leave excess food at the fire station to share. 
  • Meal services such as the drive through meals distributed in the middle school parking lot in Essex Junction were very appreciated. Families could place orders online of how many meals they needed, and volunteers organized to hand out meals safely. Local restaurants like Mark’s BBQ in Essex Junction gave out free hot meals once a week.
  • Wood food pantries were built in communities during the pandemic where folks could drive by and pick up free food.
  • Some could reduce their trips to the grocery store to twice a month if they had the monetary resources to buy larger quantities at one time:

“I could do that. I could stock up. I know other people may not be able to do that and or may not have transportation to go to the grocery store if you’re rural. For me, it’s twenty minutes to get to the grocery store.”

  • Keeping track of all the additional safety steps for grocery shopping was exhausting for participants with TBIs:

“All the sequencing, it was just exhausting. Do I have my mask? Did I sanitize? Did I clean my glasses? Did I touch my face? What do I do with the groceries? I could go out for maybe two or three hours and I would come back and I’d sleep for 12 hours.”

  • People with chronic illness often have dietary restrictions.  Accessing fresh, healthy food is especially important, as certain illnesses are exacerbated by pesticides and chemical additives.   Instacart is not an option for food access because they often must find substitutions that may not be in line with dietary restrictions:

“For me, I react to pesticides and food that isn’t fresh. So things that have preservatives or things that have been sitting on shelves for a while, things that are overripe and meat products in particular. I need meat that’s been slaughtered fairly recently. I can actually access all of those things in Vermont, I think better than in most other states. Since the start of the pandemic, it’s been much harder for me to access those things, either because production is lower or, you know, I don’t feel safe going into grocery stores. There was a lot of anxiety involved. And like, it seems like everyone else I know can access food that won’t make them sick. And I can’t say the same. That was somewhat terrifying at the beginning.”

**Suggestion:  State money for local restaurants to prepare hot meals for community. Increase food transportation and delivery services.

Health

  • Health issues that have not changed during the pandemic:  access to well trained providers, getting a diagnosis in a timely fashion, community awareness of brain injury.
  • People with TBIs and chronic illnesses expressed fear that their bodies will react worse to Covid:

“A concern that I’ve had in kind of hunkering down even more so is the potential of bringing additional brain injury that I and other brain injury survivors might get if we contract Covid.”

“Many of us feel at higher risk for Covid. And so going into the doctor’s office is very stressful.”

  • Many reported putting off regular healthcare visits. Some appreciated telemedicine options, but were concerned that critical physical symptoms would be overlooked.  Several participated successfully in OT via telemedicine, but sympathized with those who could not access the internet.
  • Access to telemedicine was an improvement for some participants with chronic illness, since travel can be hard on the body.  They now have more access to specialists from out of state due to increased acceptance of telemedicine.
  • It was important for their healthcare providers to be well versed in TBIs to give adequate healthcare, especially in a virtual environment. Several reported being treated for mental health issues or “mood disorders” by physicians who clearly did not understand the residual impacts a TBI can have on mental health:

“If you don’t have providers who understand the massive amount of symptomatology you can have with TBI, you get what I call pigeonholed and I went through that when I was first treated for this in 2013.  They told me I have a mood disorder, which of course triggers someone like me because that’s what they tell all of us. Stop telling me I’m the worst, crazy woman. So that goes back to having providers who really get it.”

  • Former IBM employee was suited up when in the facility but knew there were still risks of hazardous exposures. Concern over the health impacts of long term exposure.
  • All participants named accessible healthcare for all as a top priority, emphasizing coverage for alternative forms of therapies, such as acupuncture, sound, art, hyperbaric and oxygen chamber therapies.

Housing & Energy

  • Homeowners did not want to take the risk of ripping up floors and finding asbestos, opted to layer new floors on top due to increased cost and risk of worsening health issues
  • Need to ensure housing is accessible for everyone, people with chronic illness and TBIs need extra assistance to guarantee housing access:

“I am very concerned for people with brain injuries and people in general who don’t have that economic stability and that housing stability. Then going through the stack of paperwork they have to go through. And this ties into what I said before with a brain injury, you’ve got to go through all the paperwork and trying to retain it in your brain and filling that paperwork out and getting it in so that you can get housing is the issue. And having that advocate that I talked about, being able to help you get through all that. So if you want to know how to help somebody with a brain injury, make that process easier.”

Emergency Communications & Equal Access

  • Existing community supports and organizations are the best means to directly reach individuals:

“There’s been a lot of opportunities to reach out to the community from existing community supports.”

  • Participants reported getting information from: CDC, Department of Health website, Governor’s briefings
  • TBI support groups through the Brain Injury Association of VT and Dartmouth were cited as a major structural support for information sharing and community building, however, difficulty in managing erratic symptoms associated with TBI can make attending regular meetings challenging.
  • People with TBIs can have difficulty reading large amounts of information in one place. Participants appreciated the presentation with bullet points with space between them:

“Reading is very exhausting and I don’t because my eyes jump around. I don’t read as well as I used to. So bullet pointing like your questions are spaced in between.”

  • Many told stories of how their condition made filing paperwork for government programs such as disability or unemployment nearly impossible.  Tight turn-arounds on applications, issues with online accessibility, and extensive reading and paperwork lead to negative health impacts for applicants:

“It took two months trying to do it online before they gave me an interview. And they kept telling me that the paperwork, the computer would stop me after the first page. I don’t go to my post office box all the time. Depends on how I’m doing. And so I got the 18 page packet that I needed to fill out like on Saturday and needed to get it in on Wednesday. I can only do about two hours of paperwork a day. And I just looked at that and I had a panic attack. With my brain injury just now, I don’t write well, I don’t read well, I don’t smell well. And this is all related to my vision. So then I had a migraine.”

“It just seems like a lot of repetitive paperwork that you’re not actually even sure you’re going to get it. You know, I expect to be denied the first time. And so economically, because I’ve been able to save over the years and because I’m single, I do have a backup. But if I didn’t have my short term disability, I’d probably be sleeping on someone else’s couch and I probably would’ve lost my home.”

  • Language Access – Participants commented how people with language barriers who also have TBIs are facing an even greater barrier to accessing resources:

“I have a son in law who works in the health system and he was born in Nepal. And he also speaks sign language. And so he can do both and he helps people in that situation. So you can imagine if you had to deal with people that also have TBI. So there’s a need for more people that can do that.”

**Suggestion:  More caseworkers who are trained in working with people with TBIs and health issues to assist with filing paperwork.  Caseworkers will need to assist over several sessions and plan for hitting application deadlines, since many people cannot complete all the paperwork in one sitting due to their condition.

“I could imagine calling the Council on Aging and them sending someone out to do all that work with you in one day. Well, that would be great, except in about two hours I’d just be done. I just got nothing else to give you. It’s in there, but I can’t necessarily get it out verbally and understand.  I might be like right on target one day and I might not be able to walk up my stairs the next day. So, you know, the variation and understanding that everybody is different.”

Summary compiled by:
Jennifer Byrne, Fellow
Environmental Justice Clinic
Vermont Law School
REJOICE 2021

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: