Long COVID and your mental health

Common symptoms include

• Chest pain or a racing heart
• Coughing or shortness of breath
• Fatigue that gets in the way of daily life
• Joint or muscle pain
• Stomach problems
• Symptoms that get worse after physical or mental effort

The CDC lists

• Changes in smell or taste
• Depression or anxiety
• Dizziness when standing
• Headaches
• Pins and needles
• Sleep problems
• Trouble thinking or concentrating (brain fog)

Some symptoms may get better, then come back. Stress can make symptoms worse for some people.

Long COVID affects everyone differently, and recovery timelines vary. Not knowing what comes next can feed worry.

Ways to cope with uncertainty

• Focus on this week, not the whole year
• Keep a list of small improvements
• Make plans with a “plan B” built in
• Talk with others who live with it

Many people grieve the life they had before COVID: work, sport, hobbies, travel or simply feeling like themselves. This grief is real, even if no one has died.

People with long COVID may feel shame or isolation. The CDC notes that simply listening to their experiences can help them feel less alone.

The NHS notes that symptoms may get worse when you are stressed. Low-energy calming habits can help, like slow breathing or a regular sleep and wake time.

When thinking gets harder, people can feel they’ve lost part of who they are. This can hit hard if your job, studies or role in the family depended on a quick mind.

Ideas

• A single notebook or phone note for everything
• Alarms and calendar reminders
• Doing thinking tasks at your best time of day
• One task at a time, with breaks

You could say

• “My brain gets tired quickly since COVID. Can we keep this short?”
• “Could you send that in writing? It helps me remember.”
• “I may lose my words. Give me a moment.”

After a frightening stay in hospital, some people have upsetting memories, bad dreams or feel jumpy around hospitals, beeping machines or breathlessness.

Muscle weakness and thinking problems after intensive care are recognized parts of PICS.

Partners, children and parents may have been frightened too. Caregivers of people with long COVID can face physical, emotional and money stress.

Pacing means balancing activity and rest to avoid flare-ups, staying within the limits your body can handle.

The NHS advises being careful with exercise if you have long COVID, stopping if symptoms appear and talking to a doctor or specialist before restarting exercise.

The CDC and NHS both note that keeping a diary of symptoms and what makes them better or worse can help.

Ideas

• Bring a short written list of your top three symptoms
• Bring someone who can back you up
• Describe what you can no longer do
• Ask for a personal care plan

You could say

• “I know my tests are normal, but my life has changed a lot. What else could we look at?”
• “Could you note in my record that we discussed this?”

You could say

• “Long COVID is a recognized illness. I’m still recovering.”
• “I look okay, but I pay for it later.”
• “What would really help is…”

People who are doubted often start to doubt themselves, and may downplay their own symptoms.

The Job Accommodation Network (JAN) gives free, confidential advice on workplace accommodations and the ADA. Call (800) 526-7234 or visit askjan.org.

Changes people ask about

• A gradual return to work
• Flexible hours and more breaks
• Remote work some or all days
• Written instructions to help with brain fog

School staff, counselors, teachers and nurses can work with families and health care providers to arrange learning or other accommodations.

Losing work hours can bring real money stress. A hospital social worker or a local benefits advisor can help you look at what support you may qualify for.

Try

• “I believe you.”
• “How are you really doing today?”
• “No need to reply, just thinking of you.”
• “Want me to come to your next appointment?”

Avoid

• “Everyone gets tired.”
• “Shouldn’t you be better by now?”
• “It’s probably just stress.”
• “You look fine.”

Caregivers of people with long COVID can face physical, emotional and financial stress.

Signs of a healthy group

• Clear kindness rules
• Moderators who remove unsafe advice
• No pressure to buy products or “cures”
• Space for good and bad days

The Solve ME/CFS Initiative funds research and advocacy for ME/CFS and long COVID. Its website has patient resources, doctor-finding tips and patient stories.

Faith groups, neighbors and community centers can sometimes help with meals, rides or company. Saying exactly what would help makes it easier for people to say yes.