Supporting Someone with Tarlov Cyst Disease

Be understanding of possible limitations

While everyone’s experience with Tarlov cyst disease is different, there are some common challenges caused by the cysts pushing on nerves. Be mindful that your loved one could be struggling with the following:

• Trouble sitting, standing, or walking for extended periods
• Needing to lie down during the day
• Needing to alternate positions constantly or have certain postural limitations
• Not being able to lift or carry very much
• Needing to be near a bathroom because their bowels and bladder are unpredictable
• Trouble concentrating or paying attention because of the pain
• Side effects of medications, including brain fog or confusion

Be understanding of pain

Many people living with Tarlov cysts have chronic pain. Therefore, it is good to be aware of the following:

• Pain is unpredictable. It can come on fairly quickly and unexpectedly.
• Pain can be delayed. Doing something seemingly tolerable may result in pain several hours later, or even the next day.
• Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. You may have to repeat a request, or write things down for a person with chronic pain.
• Pain can increase sensitivity in other senses. For example, noises that wouldn’t normally bother someone suddenly are too much.
• Pain can sometimes make the person feel depressed or anxious. When in pain, a small task, like doing laundry, can seem like just too much.
• Pain can be hard to locate and describe.
• Pain may decrease someone’s patience.
• Pain can exhaust the brain, triggering stress hormones that fuel anxiety and depression.
• Pain may cause someone to cancel plans or commitments they made when not in pain.

How to be helpful

• If planning an outing or a visit, identify or arrange in advance a comfortable place for the person with TCD to sit or lie down if they need it.
• Don’t ask “how are you” unless you are genuinely prepared to listen.
• Drop off or take some flowers or pictures if you think it will brighten their day.

While well-intentioned, it can be hard for some people in pain to accept the broad offer of “Let me know what you need.” The following are things you could say instead.

• “Can I take (specific thing) off of your plate this week?”
• “I am grabbing a (for example pizza, coffee, burger), can I drop one off at your door?”
• “I am free this weekend, (or on ____day) if you want quiet company or help getting stuff done.”
• “I am running errands later, can I grab you something?”
• “I made some extra food. Can I drop some off tonight or tomorrow?”
• “You don’t have to say anything, I am not going anywhere, I am here for you.”
• “Want company? Or just someone to sit with?”
• “I know calls can be draining, want me to text instead?”
• “No pressure to reply, I am just thinking of you.”
• “I can take care of (boring or specific task) so you don’t have to.”

Letter to family and friends

Our founder, Reta Honey Hiers, wrote the original version of this letter with the hope of bettering her loved ones' understanding of her reality with Tarlov cyst disease. We share it to give others a perspective on the chronic pain, nerve damage, and life-altering changes your loved one could be experiencing.