PROS AND CONS OF LIVING WITH LUPUS AS A COUPLE

As a person with a disability, we can feel burdened by our disease, and fear that we may be a burden on others, too. My husband has never made me feel that way. He married me knowing that lupus is a degenerative disease, knowing that in sickness and health would be a real and prevalent part of our lives. He has supported me, loved me, encouraged me to be my best self, and he takes care of me without a second thought. He comes home and makes sure I have a cup of hot tea, that I have taken my medicine, he asks me, “how can I make your life better today?” He cooks and cleans, does laundry, and picks up extra responsibilities around the house when I am feeling down, all without ever complaining. I am loved without ceasing. My partner sees me as I am, on good days and bad, and loves all sides of me without question. My disease may be powerful, but my marriage is stronger.

- Jordin Maria

Honestly, I don’t know. Because I’m the one with SLE, I can’t answer. From my perspective, though, of course it helps to have someone hold your hand through things and to help you as you heal. That’ll be a pro. A con: It’s really tough being with a chronically ill person, and it can be exhausting.

- lulu izy

Having someone to go through it with, sometimes I feel like a burden.

_iamthtiam

Pros; teaches compassion, provides a better quality of life for the person with lupus, and they become a new advocate for lupus. Cons; they never truly understand what it’s like to live with lupus, they get tired of dealing with the illness, and they lack enthusiasm to support and advocate lupus.

- lupiegirl

I’m the one with lupus. My partner works full time and I do the house stuff. Except lots of the time I struggle with this. We often have to cancel plans because I’m unwell. Wish it was different.

- janus1273

I can’t see any pro’s as the sufferer, except it is easy to become the reason why things aren’t achieved and things aren’t right.

- niki.solomon

Cons...life is much harder with lupus. Pros...excellent medical care.

- mouszer51

My relationship is going well. We have our ups and downs, everyone in relationships has them. Joe knows that I have my bad days and my good days, and even my silly days. If I end up in the ER, due to very bad depression/anxiety attacks, he is there. He is a loving and caring boyfriend. We will have been together for 3 years, March 3rd. We take care of each other. We remind each other about taking our meds and make sure we each have what we need. We enjoy the little things, like our birthdays both being in September and having many hobbies in common.

- Mary Kaminski

I am the one with SLE and I have no partner. In the past I have had a partner and usually there wasn’t enough understanding. I look well on the outside but the inside is horrible, so they tend to think I can do more. Sorry not Sorry.

- missnanuk

With a diagnosis of Lupus in any form, your life will change. In order to navigate that change together, your partner should go to the Rheumatologist to get their fears and questions answered. Another set of ears is always appreciated because recalling what the doctor said can be a challenge for the Lupus Patient.

Counseling is very important as your life is going to shift, your needs will change, and old habits need to be assessed and changed to new habits. All of these changes can bring out emotional turmoil in your relationship. A trained therapist can smooth over the harsh realities and help your partner work with you not against you. They can also deal with the big emotions that will come up as you are going to mourn the way you used to be able to do things. If you have children then family counseling and explaining things them will help them as well.

- Amy Filbert

Having lupus and being in a relationship has taught me that no matter how bad the flares get with lupus, there will always be someone who will always love you unconditionally. Giving you encouragement, empathy, and even throw a wig on you, if you start losing your hair a little bit. Making you feel that you’re the most amazing person in this world, when you feel as if you are a ugly duckling. Giving you faith when you have none. Being in love and having lupus is not a burden, it is truly beautiful and amazing.

- Tonyakristin Henderson

My loving husband, Stephen has been the most caring and understanding person, especially dealing with me. I am not the easiest person to get along with when I’m having a bad day, but I feel like I am the luckiest person to have him by my side.

When you have an invisible illness, it’s hard to explain to someone who doesn’t have a clue. It’s a daily struggle being in pain or feeling sick on the inside , when you look fine on the outside. I’m saying that communication is key. Even if you’re as stubborn as I am, it’s a must. Never forget, it’s ok to ask for help and I’m finally realizing that.

- Kelly Perhach