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Nobody expects to be diagnosed with a chronic illness or disability, but it happens to people every day. You may find yourself learning how to be a caregiver of an elderly parent, disabled spouse, or child with a mental or physical illness. Acting as a caretaker for an ill or disabled family member is one of the most extraordinary acts of love and loyalty a person can undertake, even when your loved one isn’t fully able to express their gratitude.
Learning how to be a caregiver can also be tricky; you likely haven’t had professional training, and you may not know how to best support and take care of your loved one. That’s okay! By educating yourself and seeking out support for both you and your loved one, it’s possible to be a fantastic caretaker without sacrificing your wellbeing. These tips can help you have a more rewarding caretaking experience.
What Is Fibromyalgia & How Does It Affect People?
Fibromyalgia is a syndrome characterized by chronic body-wide pain. The pain tends to begin in some regions of the body, commonly referred to as tender points. These points are located in the soft tissue of the body and around the joints. Sometimes described as aching, shooting, or burning, the pain can range from mild to severe. Fatigue and trouble sleeping are also common symptoms.
Certain conditions can cause the symptoms to worsen. Participating in activities, feeling stressed or anxious, and even cold or damp weather can increase symptoms.
While the exact cause of fibromyalgia is currently unknown, there are possible triggers of the syndrome. These range from physical or emotional trauma to sleep disturbances or catching a virus. The result is invariably painful, and the symptoms can linger or worsen for years.
Related: How to Get Through a Fibromyalgia Flare-Up
How to Be a Caregiver for Someone Affected by Fibromyalgia
Being a caregiver isn’t always easy. Especially in the beginning, you may not know how best to help your loved one.
In addition to physical pain, fibromyalgia can cause people to be more sensitive emotionally and is often associated with anxiety and depression. If your loved one’s diagnosis is new, they (and you!) will be trying to process a whole lot of difficult emotions.
These tips can help you, and your loved one figure out how they can best be supported and what will work for you going forward.
Focus On The Person, Not The Diagnosis
Although it’s easy for health issues to take over all aspects of our lives, remember that your loved one is still a human, with a whole personality outside of their diagnosis. It’s essential to find a balance between talking exclusively about their illness and ignoring it altogether.
If you only talk about their health, your loved one may have a hard time reconciling with the person they are outside of their symptoms. If you avoid talking about their diagnosis entirely, they may feel like you don’t care. Check-in on how they’re feeling, but don’t forget to check in about other things also.
Listen and Acknowledge What’s Going On Without Pressure
It can be hard to see a loved one in pain without trying to fix the problem, but sometimes all they need is for you to listen, with patience and compassion. Living with fibromyalgia means there will be times when your loved one feels terrible both physically and mentally. Be there to listen to them vent and provide support and love.
It’s also okay to talk about yourself! Fibromyalgia can take over so much of your loved one’s life, but that doesn’t mean they don’t’ want to know what’s going on in your life. You can still celebrate your triumphs and share your struggles. Your partner will feel good knowing they can still support you too.
Help Out on a Practical Level
Help your partner without trying to do everything for them. Your loved one is not suddenly helpless or unable to decide things for themselves. They just need a little more help and support with practical things. Help around the house, make dinner, or pick up groceries.
Another practical way of helping your loved one is simply being there when they need you. Demonstrate to your loved one that you haven’t given up on them and that you will navigate these new and unexpected circumstances together, as a team.
Tips for Taking Care Of Yourself As a Caregiver
Don’t forget to take care of yourself as well! Spending time learning about the fibromyalgia (or the illness or disability your family member has) can help you feel less anxious and more prepared and capable, which will cut down on stress in the long term.
Reach out to other caregivers. There are many support groups for this reason exactly; when you have a space to share your experience and stresses with others who understand what you’re going through, you feel less isolated and can give and receive support.
Don’t do it all. Encourage your loved one to be independent where they can. It will take some of the stress off of both of you. Your loved one likely wants to maintain as much of their independence as possible.
Acknowledge your limits. Know that you simply cannot do it all, no matter how much you’d like to. Set boundaries and communicate them clearly to your loved one and other people involved, like doctors and family members.
Being a primary caregiver for a loved one won’t always be easy, but with these tools and tricks, it can be an incredibly rewarding experience that brings you even closer to your loved ones. Even if they can’t always express their gratitude, your loved ones will appreciate you learning how to be a caretaker.
