Posted by: seattledizzygroup | June 30, 2020

Unmasking Invisible Chronic Illness in a Changing World

Accommodating the Chronically Ill Amidst the Current Global Health Crisis

My Personal Story & Thoughts

By Cheryl Rowe

The past few months have been a challenging time for everyone across the globe.  We have all been affected by the coronavirus pandemic in various ways. Each of us is focusing on health and striving to follow new guidance. We are making an effort to adjust and find some sense of normalcy within this temporary abnormal. Everyone is trying their best, but some are having more difficulty adapting than others.

I have personally lived with a disabling vestibular (inner ear) disorder for 20 years, so I am used to facing daily challenges and have had a lot of practice adjusting to changes. That being said, I have been surprised just how difficult the past few months have been for myself and others in the chronic illness community, especially those of us with “invisible” conditions which may be horribly debilitating yet not always obvious to those around us. I’m sharing my story and thoughts to help raise awareness.

My ongoing health situation is always tenuous and even my “best” days require much effort as I struggle with a constellation of constant, severe vestibular symptoms (including dizziness/vertigo, imbalance, nausea, headache/eyestrain, visual disturbances, brain fog/cognitive issues, fatigue/exhaustion, etc.).  Under normal circumstances, I manage these debilitating chronic symptoms with vestibular therapy as well as regular holistic health treatments (chiropractic, acupuncture, massage, craniosacral, etc.).

Unfortunately, since the strict lockdown began in Washington State at the end of March, I have been unable to access much-needed medical care. I was without any health therapies at all for more than a month, and even now at the end of June only a few of my regular providers are seeing patients on a limited basis. This lack of treatment greatly impacted my already fragile health condition and resulted in a major set-back and huge flare-up of symptoms leaving me terribly incapacitated and unable to be out of bed for more than a couple hours most days (often having just enough energy to make and eat one meal a day and occasionally shower).  Honestly, I’ve been sicker and more isolated than I’ve been in years and years.  (Usually, I’m able to eat normally and shower frequently and enjoy some moderate social activities outside of the house a few times per week). I’m grateful that I have a loved one who has helped me with basic needs such as grocery shopping during these difficult months. It’s been a tremendous struggle, but I’ve been hanging in, relying on faith, and taking it one day at a time.

I’m relieved to finally be able to see a few medical providers again, but I have found it to be unexpectedly challenging to receive treatment due to new health protocols. I quickly discovered how sensitive I am to wearing a face mask and to certain cleaning product scents (even hand sanitizer).

I have breathing issues (unrelated to my vestibular disorder) that are usually mild and well-managed, so it has been surprising to find that I can’t breathe well after only a few minutes of wearing even a thin cloth face mask. Just wearing a cloth mask for a short time causes me to struggle with increased breathing issues for a day or two afterwards. In light of this, most medical providers have been willing to accommodate my breathing issues (for example, allowing a mask exception or taking frequent breaks).

One of my providers was not willing to accommodate my breathing issues and, unfortunately, I ended up suffering a severe adverse reaction. For this appointment, I thought I would try a surgical mask, hoping that it might work better for me than a cloth mask. But, just walking into the clinic, I noticed that the surgical mask obscured my view of my feet and my surroundings enough that it substantially increased my imbalance and consequently my fall risk.

Within about 15-20 minutes of wearing the surgical mask I was starting to feel extremely disoriented and dizzy (to the point that I had to try to visually stabilize to suppress symptoms by focusing on a spot on the ceiling).  I thought that I could push through these symptoms knowing how badly my body needed treatment.  However, only a few minutes later (about 25-30 minutes of wearing the mask), my neck muscle started spasming and then I quickly went into full body spasms/convulsions. 

Having this severe of a reaction, I needed to end my appointment abruptly and felt I really should take my mask off immediately, but my provider seemed to insist that I keep it on until I was out of the clinic. I was so dizzy and imbalanced getting out of my chair and standing that I fell back into a nearby table and had trouble getting on my shoes and collecting my belongings, etc.  I managed to stumble out of the clinic despite not receiving any assistance, but it took a few minutes of sitting right outside the door without the mask gasping for air to even have the ability to walk to the car where my mother was waiting for me. 

The body spasming continued (to a lesser degree) for over an hour and gradually subsided.  This also triggered a bad migraine (which ended up lasting for a few days).  Thank goodness my mother who is a nurse was there to help me get stabilized (we couldn’t even leave the parking lot for over an hour) and she was able to drive me home.

It’s been a couple of weeks since this happened and I’m still suffering some lingering neurological symptoms.  (One of my vestibular specialists warned me that it might take a few weeks for my brain and nervous system to fully re-calibrate from the insult).

My body is obviously very sensitive after 20 years of chronic vestibular dysfunction, especially after not being able to get needed medical treatments the past few months which has greatly flared my symptoms.

I had no idea that I would have such a severe adverse reaction from wearing a mask or that it would impact me for so long afterwards.  This traumatic experience proves just how dangerous it is for me to wear a mask for more than a few minutes!

I realize that everyone is on a steep learning curve these days and this was an unexpected/unintentional outcome.  My hope in sharing my story is that it might help increase awareness of potential issues in order to prevent someone else from being injured.  I found out the hard way the importance of listening to your body’s warning signs and not trying to push through potentially dangerous symptoms caused by wearing a mask.

Some people with vestibular disorders may be able to wear a mask (especially if only for a short time), but others may find it impossible to wear a mask for various medical reasons. For example, those with hearing/communication problems as from Meniere’s Disease, those with breathing issues as from autonomic nervous system dysfunction or anxiety, those for whom it triggers Vestibular Migraine or severe nausea, and those for whom it causes or exacerbates lightheadedness/dizziness/imbalance which increases fall risk, etc. (A face shield might be an alternative option for some people, but beware the curved plastic may cause increased dizziness and imbalance for those with vestibular disorders which could be unsafe).

All state and county mask guidance provide medical exemptions for people who find wearing a mask difficult or dangerous. The Americans with Disability Act (ADA) also grants people with disabilities equal access in society and protection from discrimination.

It’s important for medical providers to try to work together with their patients on appropriate accommodations so that those who need care can continue to receive treatment. Likewise, service providers and businesses should strive to appropriately accommodate those with medical exemptions. (It would be helpful if willingness to accommodate is reflected in any signs posted, so that people with disabilities feel welcome).

I’m very concerned about the continued negative impacts upon the health and quality of life of those in the chronic illness community if accessibility issues are not addressed and accommodated. This will require compromise.

If someone shares with you that they are having or have had an adverse reaction to wearing a mask, please believe them. Don’t presume that they are exaggerating or overreacting. Many people seem to think that wearing a mask is “easy” or “tolerable” because that’s how it feels to them and they may not realize how difficult or dangerous wearing a mask may be for someone else.  Even if you don’t fully understand, please don’t dismiss someone else’s experience. Those of us who live with chronic “invisible” conditions don’t expect others to always understand our struggles, but we want to feel validated, cared about, and supported.

People who are unable to wear a mask, should practice good hygiene and make an effort to stay 6 feet or more away from others in public. (Masks are an added precaution for when people are closer).

Always be sure to give anyone not wearing a mask or other face covering the benefit of the doubt that they have a medical condition which makes it difficult or dangerous to wear a mask. Don’t automatically assume an unmasked person is “selfish.” Many chronic health conditions may seem “invisible” but may actually be quite disabling. If you feel uncomfortable, just stay further away. But, please be kind and respectful and do not say anything negative or shame others since you never know someone else’s personal circumstances.

Sadly, I’ve heard many concerning stories in online chronic illness groups of disabled people (especially those with “invisible” conditions) being shamed and harassed for not wearing a face mask in public—even when they are striving to keep physically distanced. In an effort to avoid the horrible contempt of others, a number of chronically ill people have unfortunately passed out/fallen down and gotten hurt in stores trying to comply with wearing a face mask despite it being unsafe for them. Some of the already marginalized and struggling people in the chronic illness community are so discouraged by this lack of compassion and accommodation that at this point they are openly contemplating suicide. This discrimination of vulnerable and suffering people breaks my heart and needs to stop!

Please, let’s all try to offer more sensitivity and support towards others. Let’s strive to care for each other and make accommodations for one another as we adjust to changes and get through this health crisis together.

Information from the Centers for Disease Control (CDC):
www.cdc.gov/coronavirus/2019-ncov/index.html
www.cdc.gov/…/pro…/infectioncontrol/maskguidance.htm
wwwnc.cdc.gov/eid/article/26/5/19-0994_article

See also:

9 Ways to Support Chronically Ill Folks During Covid-19 Outbreak

Seeking Balance in Challenging Times

Strategies for Calming Anxiety Amidst Uncertainty

Ways to Cope While Socially Isolated

*Always use your best judgement regarding personal health decisions and stay home when you are sick. Consult your doctor for medical advice.*

*This personal story and thoughts are not meant to provide medical advice and do not necessarily reflect the various opinions and experiences of others in the vestibular community or the views of Seattle Dizzy Group.*

© Copyright 2020, Seattle Dizzy Group. All rights reserved.


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