Feb. 12, 2018

Sharing the Journey: Relationships

The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What challenges has lupus created in your relationships and how do you keep your relationships strong?

I think what makes relationships challenging with lupus is finding people who understand this disease. For me, this means having fewer, more deeper relationships. It’s important that the other person understands that you’re not always 100 percent all of the time, and accepting of the times that you must cut activities short or simply back out. It also is important for others to be willing to change the way things are always done to help accommodate you on your worst days. I feel very fortunate to have relationships like this, but I’ve also had to minimize the number that I have, simply because some people just can’t wrap their mind around the complexity of the disease. While at first this was difficult for me, I soon realized that it was more important to have people in my life that supported me in all areas of my life. – Roxi

Because lupus is an unpredictable disease I find it difficult to fully express the gravity of the disease when I am doing well. And if I am sick, I often try and downplay it. It can be easy to sugarcoat things. But if you’ve found the right person, you shouldn’t have to do that. – Leslie R.

Lupus has affected my relationships in two main ways. The first is that it negatively affects the time I spend with my friends.  Because of the exhaustion I battle as a result of lupus, I often become tired much quicker than my friends and have days when I don't feel up to doing much at all. As a result, sometimes I am not able to spend time with my friends when they are all relaxing together. And often if I do choose to spend my free time with them, I feel tired and irritable the whole time. The strain of getting through the things I am required to do during the day often leaves me with little energy to use when attending social events with my friends. To combat this, I try to choose specific events that I know are important to my friends to attend. I then make sure to get sufficient sleep in the days leading up to it so I have the energy to be myself when I am there. Letting my friends know that I can't attend every "hang-out" is difficult, but letting them know why makes the conversation a little easier. The second way it has affected my relationships is influencing the way some of my friends see me. I have one friend in particular who I don't see very often, but when we spend time together to catch up, she always asks how my lupus is. To me, it feels like she automatically thinks of my disease when she thinks of me, and I wish she would look through my disease to see who I really am as a person. However, I constantly have to remind myself that the reason she is always asking about my health is because she cares about me.  Sometimes that care just may not take the form I want it to. – Becca M.

In many ways lupus has strengthened my relationship with my husband, especially. This is partially due to the various healing modalities we have been encouraged to explore. We’ve done some of these healing modalities together and shared what we have learned. Also, lupus led to seizures/epilepsy which has brought us closer. It's been difficult at times because for me there is sometimes a dependency, and for my husband there’s almost a sense of being anxious to ensure he is watching over me. So, it is an interesting dynamic. We are currently in the midst of a thorough inpatient evaluation for several days that will determine my current status with seizures. A process such as this brings us very close to each other. - Betsy

I feel that having lupus has changed my relationships with people immensely, not only positively, but also negatively. The way it has affected me positively is that it drew me closer to my family and friends. I think they realized that life is too short, and you never know what will occur, so you need to enjoy the presence of the ones you really care about before it is too late. I believe that it has affected my relationships negatively because I was very scared to open up and I did not know how to react and cope with my lupus, so I would often shut people out and always hold up a guard against them. That eventually made my relationships stronger because they realized that since it was affecting me so much it had an effect on them too. I will always be grateful for the people in my life that have shown me love and support through my lupus journey. – Kyra S.

The Rewards of Relationships

Maintaining friendships and relationships can be difficult when you have lupus, but good relationships aren’t just rewarding – they’re also great sources of support in dealing with lupus and other hardships in life. Real friends will understand when you need to stay at home due to fatigue or take steps to accommodate your health needs, and know that there are plenty of ways you can enjoy time together!

Check out this resource to see how your friends can help you live a healthy and fulfilling life with lupus.