Supporting a loved one who has a sleep disorder
Tips for supporters of people with a hypersomnia such as idiopathic hypersomnia, narcolepsy, or Kleine-Levin syndrome
Having idiopathic hypersomnia (IH) or a related sleep disorder, such as narcolepsy type 1 or 2 or Kleine-Levin syndrome, can be incredibly stressful for both the people with hypersomnias (PWH) and their supporters. PWH are dealing with being “beyond sleepy” most of the time and suffer from non-restorative sleep along with many other symptoms and life stressors. Supporters are trying their best to be supportive of their loved ones with hypersomnias, while managing the rest of their lives. The following tips were provided by both PWH and their supporters.
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Take care of yourself
- Make time to nurture yourself physically and emotionally.
- Develop and become involved in your own support network.
- Involve others from all of your support networks when you need a break or can’t be flexible.
- Work mindfully to prevent “supporter burnout.” For more information, read WebMD’s article “Recognizing Caregiver Burnout.”
- Join a support group for supporters, which can help affirm that you are not alone as a supporter living with the effects of a hypersomnia. Such a support group can also help increase your awareness of hypersomnia symptoms, provide you with effective coping strategies, and help you stay current with hypersomnia-related medical and research developments and advocacy events. There are several online groups; check out the list at Hypersomnia Alliance.
Be a partner
- Become informed about the disorder.
- Visit our web page “Read about hypersomnia sleep disorders.”
- Learn how the person you support is specifically affected by their hypersomnia.
- Learn about sleep hygiene and how to support the PWH with their symptoms.
- Become informed about your PWH’s other diagnoses, if any, and their effects.
- Remember that the PWH is likely doing the best they can to lower the impact of their hypersomnia symptoms, including following the careful guidance of their doctors. It may be tempting to offer additional, well-intended suggestions, but that may feel overwhelming or confusing to the PWH.
- Effective prioritizing is key. Communicate with each other about which tasks, events, etc. are important or are priorities.
- Attend medical appointments, if possible and if desired by the PWH, to provide support and to learn more about the diagnosis, treatment plan, etc.
- Be part of the solution:
- Volunteer your skills and talents to the hypersomnia community
- Consider attending events such as conferences and education days
- Become involved in fundraisers
- Participate in a support group, assisting other supporters, affirming and validating their experiences. There are several online groups listed at Hypersomnia Alliance.
Communicate respectfully
- Be a listener who cares by validating, believing and just being present with the PWH and supporting with kindness and empathy.
- Try to foster hope and be judgment-free when interacting, which encourages openness. (Read this PDF article about non-judgmental communication.)
- Try to avoid surprises. Discuss plans in advance whenever possible. Immediate real-time decision-making is often very difficult for PWH.
- Communicate collaboratively. Determine together the preferred ways to approach discussions and questions about shared tasks, etc.
- Timing is everything. Discuss with the PWH the best times to communicate with them and learn when to discuss important things. Keep in mind it is hard for PWH to have discussions when experiencing severe sleep inertia or brain fog and that this can’t always be predicted.
- Flexibility is important. The timing agreed on to talk may not work out for the PWH at the last moment. If possible, allow the PWH to process or think about the situation or question before making a decision.
- Be aware that PWH often experience significant changes in their daily lives, as their symptoms fluctuate, when trying new medications, etc. These changes may require adjustments in how you communicate with each other.
- Open-ended questions can be overwhelming to some PWH. For example, rather than asking, “What do you want for dinner?” try offering 2 specific options instead: “Would you rather have X or Y for dinner?”
Manage your expectations realistically
- Keep in mind that PWH can’t control their symptoms. Just like people with diabetes can’t will their blood sugar to be under control, PWH can’t force themselves to be wakeful.
- Understand what the PWH is capable of giving or doing, which may change from day to day. It can be beneficial to regularly ask PWH what they think they would be able to give or do at a given time.
- Be flexible so symptoms can be accommodated both in the moment, such as sharing a meal or being together, and in the future, such as a change in plans for an event.
- Help make meal (and other) choices easy, and consider planning ahead. Many PWH prefer having a choice among a couple of options, whereas others prefer to make choices from menus (home or restaurant-based).
- Be aware of situations that may cause additional stress for the PWH, such as dealing with work accommodations, short- or long-term medical leave, disability, or battling insurance claims. Whenever possible, offer to help.