Sister's Day

We recently celebrated Sister's Day on August 3, 2014. No matter how close you are with a sister, I think you will always have some special bond. I am nine years older than my sister and we have never been extremely close, but we do have a connection that I wouldn’t trade. We are so different, yet oddly the same. I have never talked to my sister about my lupus and PH, but sometimes my sister will come along to my doctor appointments. If anyone has seen me at my worst, it has definitely been my mom and sister. It is a part of my life that I let few people see.

With these illnesses, I have done my very best to maintain an extremely positive attitude. I want to be a role model to all who enter my life, but I especially want my sister to know that nothing can stop you. You can have the life that you choose, you can do anything. I asked my sister some questions about my lupus and PH, and how she feels about this whole situation. We have never had a conversation like this, so it was out of both our comfort zones.

My interview with my sister:

Do you worry about your risk for developing PH or lupus because I have them?

Having a sister with lupus and PH, I am concerned that I could potentially be at risk. From what I know both illnesses can be hereditary and I've never been checked for either one.

How has my illness impacted your life?

Your health issues do impact my life because I worry about you. I don't always know what is going on with you being sick, so it is hard when I see you some days and I can just tell from looking at you that you’re in pain. When I can hear you having a hard time breathing or coughing, it’s scary because I don't know what's causing you to have these problems. I personally don't know much about your illnesses or what you are going through, so I don't really know what I could potentially do to help when you’re having a bad day. It’s just hard when you know someone you love is sick, it’s just worse when you can see the effects the illnesses have on them.

 I can understand how any person who has a sick sibling could feel scared and at risk. Even though we have no family history of lupus or PH, it is still something that could show up. I think that family plays an important role in my health and my wellbeing, and it is good to know that I am supported, but I also want my family to know that even on a bad day I will always fully support them.

I also have a sister-in-law that I have become very close to over the past few years. She lives in North Carolina, and I try to visit her, my brother, and their three kids as much as possible. Jena, my sister-in-law, has lupus. She was diagnosed at a much younger age than I was – she was only 14, whereas I was 24 at diagnosis. In my opinion, her journey with lupus was much more difficult than mine. I can't imagine having to go through high school with the aches and pains and fatigue! I asked her a few questions about PH, too.

My interview with my sister-in-law:

5/1000 lupus patients may have PH. Had you heard of PH before you met me?

I didn't know about PH, and I also didn't know that 5 out of 1000 may have PH. Once I learned this info, I realized that I could be at risk for PH, too.

 

You have three sisters who don’t have lupus or any other chronic conditions. Does your lupus impact them?

I don’t think my lupus majorly impacts their lives. Our grandmother did die at the age of 28, and she had scleroderma, which is another disease that can be associated with PH.

 
I am so happy for Jena, she has been able to marry a great guy, my older brother. They have three incredible children, and they are such a joy to be around. She is also becoming a teacher, and has about a year left of school. It is so great to see how people in my life push through the pain, literally.

Sisters are so important to me. I learn so much from them, and I do count my friends as my sisters too. Not everyone will know the joy of fighting with their sister, and the craziness that is involved with having a sister; it’s an experience that is hard to describe. I am blessed to have a sister, a sister-in-law, and friends who are sisters. I try to celebrate these people every day in some little way.

Written by Elisa L.

Do you have a sister or other person in your life who helps support you? Be sure to share PHA's resources for caregivers with them! Learn more at www.PHAssociation.org/Caregivers.