By: Paige Wyant
If you have a partner, spouse or loved one in your life with chronic fatigue, it can be difficult to understand exactly what they’re going through unless you’ve experienced it yourself. They likely require much more time sleeping or resting than you and may not feel up to going out very often. Chronic fatigue (note that chronic fatigue syndrome, or myalgic encephalomyelitis, is a separate diagnosis that causes debilitating fatigue) can also inhibit a person’s ability to work, accomplish household chores or even do everyday things such as showering and eating.
If one person is chronically ill but the other is healthy, this can easily put strain on even the strongest of relationships. Although it may be harder to put yourself in the other’s shoes or find a balance in which you both feel like equal partners in the relationship, it is certainly not impossible – and for many couples, facing obstacles together such as chronic illness can actually strengthen their bond and deepen their love for one another.
We asked our Mighty community to share ways for people to help their spouse or partner with chronic fatigue (these tips also work for husbands and boyfriends with chronic fatigue!). If your loved one is affected by a chronic health condition, perhaps the following can help you better understand what they experience and provide some ideas of things you could do that might mean the world to them.
Here’s what our community told us:
1. “As a person living with chronic illness, please just validate us. Read about our illnesses and really try to imagine it being you. Not just in our most obvious difficult moments but every day. A smile doesn’t mean it’s gone.”
2. “Listen and be patient. It is so important that the other half needs to stay calm [because], if you’re like me when my chronic fatigue syndrome takes toll, I get very moody and tired quickly so I can start arguments easily!”
3. “Realize that our fatigue is not just ‘being tired,’ and don’t tell us you are ‘tired’ too. [Chronic fatigue] is often overwhelming, heavy exhaustion of our body, mind and very being that never goes away. Your ‘tired’ is likely equivalent to my ‘somewhat energetic’ day.”
4. “Best thing my husband does: support me in trying different treatments. If I feel like I need to try a new medication, get off a medication, something homeopathic, he supports me and helps me deal with whatever the outcome is.”
5. “Sometimes we just need a pair of ears to listen. We don’t always want someone to try and fix things. And we don’t always need someone talking us out of feeling down. It’s OK to have bad days – a little acknowledgment goes a long way!”
6. “Learn about the illness. Look up an article or pick up a book even to just learn a little bit more. Doing things without being asked in regards to helping someone with a chronic illness or learning more about what they are going through means a lot.”
7. “Offer to grab them stuff. It may take every ounce of energy I have to walk 15 feet to get a glass of water. Someone saying, ‘Don’t get up, I’ll get it for you!’ is a huge relief.”
8. “Don’t be afraid to voice your own pain or struggles. Just because we feel it almost 24/7 doesn’t mean we don’t care or don’t want to hear what’s going on in your life. We complain, so complain with us.”
9. “Understand that sometimes plans cannot be made ahead of time. Vacation plans can change, laundry might not make it out of the dryer, dinner might be take-out. Know I would love to have the house spotless and [cook] homemade meals every night and still work, but my body doesn’t work the same way my mind does, and sometimes my mind doesn’t work the same way my heart does.”
10. “Help us plan ahead. Knowing about events or outings in advance gives us time to rest up before, and preemptively take any steps to make it easier when we are out.”
11. “Bring food to bed and help us wake up enough to eat. When mine is at its worst, I will sleep for days without eating unless someone does this, causing me to lose a dangerous amount of weight.”
12. “Treat me like a burrito…wrap me up in blankets with my heating pad to keep me warm and bring me a bottle of water, ibuprofen and the remote for Netflix.”
13. “Get involved! Go to doctor appointments and tests and procedures. Get to know your spouse’s conditions.”
14. “The way we measure a lot of things like pain and tiredness is incredibly relative. Make sure you’re using [your partner’s] rubric for things instead of your own.”
15. “When someone else is making light of our condition, stand up for us. It’s exhausting having to constantly defend the lifestyle decisions we make to others who aren’t in our shoes. Having someone else take the reins and help explain things not only lightens our load, but validates our struggles and choices as well.”
16. “Remember us as people, not our pain. On our worst days, we may do and say things we don’t mean. Just acknowledge that we are struggling and it hurts us that we sometimes hurt you.”
17. “[Don’t] make them feel guilty, or less than, for not being able to do everything they wish they could to help contribute (cleaning, cooking, working full-time, etc.).”
18. “Sometimes it’s the little things: my husband will do things like carry my plate to the kitchen for me or give me a hand when I try to get off the couch (because seriously, just standing up takes so much energy on those high fatigue days!) I think it’s super important to talk to your spouse, find out what things they struggle with and try to help with those.”
19. “Love unconditionally. Help us when we need help. Don’t help us when we want to do it ourselves. Understand when we don’t want to be touched or when we need a hug. Speak up for us. Listen to us. Watch for non-verbal clues. Tell us we are good enough. Take your vows seriously – ‘in sickness and in health.’”
20. “Make/get us food. Food prep takes so much of our daily energy. It’s a mission. So helping with that will free us up to use spoons to do other things around the house or in life.”
21. “Understand that every day will be different as far as energy levels goes. Help with chores on bad days and without giving a guilt trip. Celebrate the good energy days.”
22. “Just love me, hold me and let me know you are there for me! In my weakest moments I am very vulnerable and just need your love to see me through.”
Via- The Mighty.