Living through the COVID-19 pandemic is difficult for everyone. However, it is certainly more challenging and stressful for anyone with a health complication, especially MS. In particular, quarantine and some safety precautions come with unique challenges for those with MS.
To hear more about how the MS community is handling COVID-19 protective measures, we asked our Facebook community: “What safety precautions have you found to be the most challenging with MS?”
More than 100 community members weighed in. Here is what you had to say.
Wearing a mask in the summer heat
The number 1 answer in the community was that wearing the mask in the summer heat exacerbates heat sensitivity, which is a big problem for those living with MS.
“When I have had to go into Walmart I pretty much end up having a panic attack. I get hot, feel like I cannot breathe, and there are so many people not distancing or wearing masks. When I have to work anywhere from 8 to 10 hours, it is a struggle. If at any point I feel like I am getting hot, I panic. 2 years ago, I had my worst episode because of heat. I am terrified to get too hot.”
“I live in Texas, and with the heat and humidity, wearing a mask wears me out!”
“Thank you for bringing this up. The mask overheats me quickly and then I do not have any energy to complete the task I went out for.”
Difficulty finding an open bathroom
Bladder problems can be a big issue for those with MS, so it makes sense that the lockdown on public toilets has been problematic. Not knowing if you will be able to find an available public bathroom can prevent you from leaving the house for errands or day trips.
“Not being able to find a public bathroom to use in a bladder emergency is tough.”
“My husband and I are both retired but we like to go fishing, and with the bathrooms closed it is very hard for me to go. I stay home a lot because of the heat. It really drains me.”
“I have bladder issues, so when fast food places were not letting people use their restrooms, my hubby and I could not even take a long ride to get out of the house.”
Trying to avoid other people
For many people with MS, it is often harder to quickly move out of harm’s way. With COVID-19, that makes for an added challenge and can cause people to feel anxious.
“I think trying to dodge others that are very careless in public about safety. I do not react quickly in a physical way to be able to swiftly avoid someone who has just sneezed or coughed without a mask on. It is very scary.”
Explaining what it means to be at higher risk
As much as the physical challenges of COVID-19 are taxing, the emotional aspects are even more difficult to navigate. COVID-19 poses more risks to people with MS than others without underlying health issues. Not everyone immediately recognizes this, and people with MS are often forced to explain their reality and risk factors to others. That can be draining.
“I had a major issue with Walmart pickup today and talked with corporate. No one seems to understand the word ‘immunocompromised.’ They refused to bring my groceries out when there was a supposed thunderstorm yet the rain was very minimal and the sun was coming out. Literally told me to come back later or come inside. They could not get the concept of ‘I cannot come inside.’”
“Getting my husband of 25 years to understand I cannot go for rides to the supermarket or Lowe’s to get out of the house.”
Thank you to everyone who shared their experiences for this story. We appreciate your vulnerability and honesty.