Juana and Estela Mata Share their Story of Living with Lupus, as a Patient and Caregiver

From one day to another you can start getting debilitating symptoms, aches, pains, organ involvement and the next thing you know you have a lifelong chronic illness, Lupus.

Immediately you are scared because you don’t know what to expect, all you know is that there is no cure, that Lupus can attack your organs, affect your kidneys and you may need dialysis. It can affect your heart, your lungs or your blood, and you may need chemotherapy treatments, you will have to live with Lupus for the rest of your life because there is no cure.

Lupus doesn’t just affect the person diagnosed, it also affects their loved ones, family and friends. Lupus impacts everyone differently and can be very unpredictable. Sometimes a Lupus survivor may not need a caregiver to take care of them physically but may need moral/emotional support.

If you are a spouse, sister, brother, friend or coworker, by default you have a new role, the role of a caregiver.

What is a caregiver? A caregiver is someone that cares for their loved ones, sometimes you may provide only emotional support, and other times your role might have more physical and emotional involvement. This new role can be fulfilling and the emotional bond can be beneficial for both. However, it can also be a bit overwhelming for both the newly diagnosed and the caregiver.

In order for a caregiver to be able to take care of their loved one, they must take care of themselves first. As a friend, sister, caregiver, I know this too well. I know how it feels to see your sister be in pain, go through chemo treatments, lose her hair, have butterfly rashes, not be able to breathe and fight for her life all in a blink of an eye. It is a very scary, challenging illness; however knowing that you are not alone gives you courage to not give in.

Caregiving can cause stress, it can affect the caregiver physically, emotionally and mentally. The impact can be different depending on their loved one’s health challenges, their needs or even the caregiver’s own needs. Here are some tips that helped me and that may help you whether you have been a caregiver or you just acquired the new role.

Here are some tips from both Juana Mata, Lupus Survivor and Estela Mata, Sister\Caregiver:

1. Knowledge: Learn about the condition your loved one suffers from. This will help you understand how they may be feeling and how you can help. Learn about the medications they are taking and the side effects. Learn about the foods that will ease the inflammation, those that will trigger flares or cause inflammation. Learn about types of exercises that may help.
2. Communication: Talk to your loved one, so there is a clear understanding on what you can do or what they want you to do for them. It is good to be helpful but don’t overdo it, you don’t want to be too intrusive.
3. Support: As a caregiver you also need support, find a support group so you can talk to other caregivers; this will allow you to learn and share ideas that can help you. Talking to others that are going through the same thing will reassure you that you are not alone. Remember they can help you as much as you can help them. If it helps, seek a counselor\therapist. Talk to a friend, another family member. If you don’t want to talk about it, write down what you are feeling.
4. Companionship: Enjoy each other. Plan things that both you and your loved one enjoy doing. Taking walks, a yoga class, going to museums or simply enjoy a sunset at the beach.
5. Normalcy: It’s ok to feel angry, helpless, frustrated, hopeless, resentment. It is normal, these are your feelings accept them; there is nothing wrong with feeling that way.
6. Relax: Take breaks, choose a quiet area, close your eyes for 5 minutes, listen to yourself breathe while you visualize being in serene place with birds and waterfalls. Take a bath. Use calming essential oils. Listen to soothing music.
7. Health: it is important that both of you keep your doctor appointments, get your annual checkups. Exercise and have a well-balanced diet. Sleep well, get as much rest as you can.
8. Stress Management: Start a hobby, something that relaxes you, such as Meditation, Yoga, Reading, Massages, Art therapy, Loom knitting. Use Positive affirmations to help ease with coping with stress.
9. Recharge: Make sure you rest and take breaks throughout the day if you are a full-time care
   giver. Signs to watch for: If you feel any of the following you may be in need to recharge or to speak with your healthcare provider for more support: Feeling exhausted even after resting, feeling overwhelmed, and not caring, feeling impatient\irritable with others\care receiver, feeling hopeless.
10. Remember: You have to take care of yourself before you can take care of others.

Lupus Research Alliance is your COMMUNITY, you are not alone. We support the Lupus survivors, the caregivers, family and friends. Our community is here for you, please click on the link below to share and learn from others. Lupusresearch.org/community