The Challenges of Being a Rare Disease Patient AND a Caregiver

Brenda has both psoriatic arthritis and psoriasis. She’s lived with the conditions since she was a child, learning to care for herself and deal with the challenges that arose. By age 12 she was handling her own treatments. Thankfully, just in the past 3 years, she has been on a medication that has successfully treated her psoriasis. However, while her skin is much better, she still experiences joint flares in the right side of her body from the arthritis.

But through all that Brenda has been through, she never expected to become a caregiver as well.

Just last year her brother Jonathan was diagnosed with  stage 2 Hodgkin’s lymphoma. She instantly fell into the role of caretaker despite her own health challenges. She says-

“When you love someone, you will do anything to help them get better.”

A Patient and a Caregiver

In some respects, Brenda was very well equipped to handle her brothers medical needs as she was so used to taking care of her own. She knew how to navigate insurance, hospitals, and doctors. But that doesn’t meant that taking on a role like this was easy by any means.

She would keep him on track for his chemo schedule, encourage him to get out of bed after chemo, prepare his food, and run his errands. She was the liaison with his oncologists, she handled all of his insurance, and she administrated everything that needed to be taken care of on his behalf. On top of all of that, she scheduled the medical appointments that her parents needed, who she and her brother both live with.

Brenda describes one of the worst parts of the process – seeing her brother in pain. Her own condition flared up as a result of her ongoing stress.

At times her brother would lash out. She said- “I kept trying to remember that this is not him right now.”

He was angry, scared, and in pain.

Knowing Your Limitations

Sometimes Brenda had to step back from her role. The pain of her own condition was so strong she wasn’t able to give her brother what she wanted to provide to him. Knowing her brother depended on her, she typically just pushed through. But, Brenda also knew that if she took it too hard they would both be in a worse position later on.

She says that caregivers are typically better if they take time for themselves. It’s hard to think about things in this way in the moment. But in order to provide for others, you must make sure that you are also taken care of.

Some of the things Brenda would do for her own self care is to take time to do mindful breathing, take breaks while her brother was in chemo to get out of the house, and reach out to others when she needed it.

She realized that it was okay to ask for help. She would reach out to her sister who would also help with taking Jonathan to appointments. Brenda is also thankful for the support from her boyfriend and her support groups online (both as a caregiver and a psoriasis and psoriatic arthritis patient).

These individuals provided her not only emotional support but practical tips on how to manage everything.

Thankfully, Jonathan is now cancer free and Brenda’s duties have waned. But the love that she has for her brother means she would do it all over again in a heartbeat.

You can read more about Brenda’s story here.

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