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Jessica’s Coping with Lupus Corner

Falling in Love — With a Chronic Illness Like Lupus

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

A recent post on our Facebook page inspired me so much that I want to revisit the topic of dating with lupus or any chronic debilitating disease. After you read what Steve Howard has to say about his experience dating a woman who had lupus, I think you’ll agree getting out there and being open to falling in love is well worth the effort!

I dated a woman that had lupus. Before we even had our first date, she told me she had lupus. She explained what it lupus was...and what it wasn't. Her lust for life and spirited fight against lupus was more than I could resist. We were... married on 06 May 2003.

It sounds very flippant to say this, but it really is true. If your date can’t handle the fact that you have lupus, then they are the ones missing out. Keep looking. You can do better.

People like that just don’t understand what lupus does to people. I’m not talking about the bad stuff. I mean the good stuff. The strength lupus patients can develop whilst battling their illness. The education they get as they explain this misunderstood illness. In some cases, they become the teacher and the doctor becomes the student.

They will miss out on you...and that really is a shame. My wife died on 24 February from complications of lupus. We weren't even married 8 years. But she changed me in ways I never dreamed. I shudder to think what I would’ve missed out on if I had said “You have lupus? Bye!”

Following is a column my predecessor at the S.L.E. Lupus Foundation, Danielle Hall, MSW, manager of social services wrote a couple of years ago is just as applicable today.  Basically, someone who is a “keeper” is someone who isn’t put off  by a challenge, whatever that may be.

Single with Lupus

Most singles agree: dating can be fun, frustrating, exciting, and dreadful at the same time.

But add a chronic disease like a lupus, and dating can become truly difficult and an overall stress. 

I’m here to tell you that although lupus may add a constraint on a relationship, it is realistic to date, have a relationship, and find love.

First, it’s important to admit to yourself when you are ready to start dating.

Your introduction to the dating world needs to be balanced and unhurried so you can maintain a feeling of self-assurance and self-respect. For example, if you are in the middle of a flare, or maybe changing your medication and experiencing side effects, you should probably wait until you feel better.

Think of dating as something like running a race: You want to prepare yourself and go in to the race with a positive attitude, excited, and strong—physically, mentally, and emotionally.

Here are some dating-related questions I often get. I thought you might like to see my take on them:

Q: I’m constantly exhausted from the lupus. How can I date when I feel this way?

A: We all know that the fatigue of lupus can be difficult to cope with. But dating doesn’t mean you have to stay out late and dance the night away! There are many date ideas that can accommodate your energy level: going to the movies, cooking a romantic dinner, or just watching television. The date isn’t the important part—it’s the company that matters!

Q: My lupus medicines don’t make me feel very attractive. What can I do?

A: Unfortunately, the medicines for lupus can cause unpleasant weight gain, hair loss, bloating, and other reactions. But keep in mind: most of the time, we are our biggest critics, so although we may feel unattractive, others do not see that side. If your confidence is low, remember all of your great attributes. Try talking to a friend who can help you replace your doubts with feelings of confidence and self-assuredness.

Q: When should I tell a potential boyfriend that I have lupus?

A: I think it’s important to be open and honest about your situation with any potential partner. That said, boundaries are important to keep in the beginning especially. Since everyone’s lupus is different, you have to decide when it is most appropriate for you to be open about having lupus.

Q: What if my date gets scared when I say I have lupus?

A: First, explain what the disease is about, and assure your date that it is not contagious or life-threatening. Brochures from the S.L.E. Lupus Foundation can help do the explaining for you, describing symptoms, risks, other important things a person should know about lupus. 

Give your date some time to process the information. Most likely, he’ll understand. And it’s natural for him to have questions and want to discuss concerns. 

If your date gets scared, and finds he cannot accept your condition, keep the following in mind: a meaningful relationship should be one that encourages and supports you in your struggle with lupus.


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

Just have to say to all

Just have to say to all single Lupus sufferers, don't give up. I was diagnosed with DLE when I was 28. I was in a relationship then with a 2yr old daughter. We broke up when I was 39. I did have a relationship for a few years after that but that didn't work out, nothing to do with the DLE. At 47 my face was quite ravished by the leasions, even creating holes in the sides of my nose and to top it off I was one of the few that develope into SLE as well. So here I was, tired, sore, trying to maintain an income and retreating due to slowly surcumming to the stares and comments I would get in public. Now I want to make it clear that my face is affected badly. I barely have any normal skin left accept around my mouth and on forhead. Hair loss right on my crown that is permanant and thining and half and eyebrow! I resigned myself to the fact that I would be alone for the rest of my life.
To cut a long story short, I am now in a relationship with the most loving, caring guy. He is the love of my life as I am his. To find such a joy when I am at my worst seemed to me to be a miracle, but I have since realised that it is something we all deserve. There are people out there that truely do feel that it is the person and not the package that is the most important thing. Yes, I do feel sometimes that I do not wish to burden him with what I have always felt was mine to deal with but he is constantly reminding me that it is not mine...it is ours and is not a burden...it is part of our lives and together we will stand. I am now nearly 49, my face, hair loss, tiredness and pain are getting worse and I have never been happier. Never say die when it comes to love. Hey, you have lupus so you know how to be strong. Remember, it is something you have, not what you are and there are people out there that feel the same way.

 @Anonymous I think fear is

 @Anonymous

I think fear is understandable, particularly the anxieties that come along with finding acceptance from a significant other. Remember that you have a lot to offer, and that you are not defined by  lupus. Yes, you want someone who accepts the ways in which lupus impacts your life, but dating is also about you figuring out if someone meets your standards, not only if you meet theirs. You can email or call me privately if you would like to talk further: 212-685-4118, ext 32, jrowshandel@lupusny.org

 

Warmly,

Jessica

 @VukiAnonymous Thank you for

 @VukiAnonymous

Thank you for the encouragement you have shared with our readers. I'm glad to hear things are going well.

 

Warmly,

Jessica

on one hand.. i'm so willing

on one hand.. i'm so willing to get into a serious relationship. i want to get married. i want kids.. but at the same time i'm so afraid..

i'm 31 now and i was diagnosed with not just lupus but sjogren's syndrome 2 years ago..

i'm still trying to juggle life and work but been good about seeing a specialist to keep my illnesses under control.

as it is, it is tough to find a partner, let alone someone who will understand the illness etc...

i hate feeling this way but sometimes i can't help it... any advice?

Living with lupus

I have been living with lupus for over 10 yrs am happily married with 3 beautiful children.I would like to encourage others that your life can still go on as normal.Ive married a wonderful man who is so caring,loving really boosted my spirit to live my life to the fullest.My advise is that dont stress yourself with all the worry of this world keep focusing to Jesus He is the true healer I have experience it.Thank you Jessica God Bless

 Thank you so much for

 Thank you so much for sharing your story! I am glad to hear that you have such encouraging friends. And thank you for sharing this blog with your friends 

 
Warmly,
Jessica

Love: a want or a need?

hi there jessica! i just read your blog. i was interested because ever since i was diagnosed to have SLE my, what you call "lovelife" seems to be blank. i was diagnosed about 7 years ago when i was almost 12yo. before that, i just hate to go to school because when i arrived, almost everyone would say, "there's _____'s crush!", "here's a letter from ____.", "_____ said hi.", "___ is mad at you because her crush has a crush on you.", "____ loves you." or some would court me. if you know what i mean. :) but then when i had lupus, i haven't heard anything from it anymore. there are rumors that someone has a crush. but that was only a crush not to mention it's a rumor too. the truth is, i just missed those times. i told one of my friends about it. she then told me that, a little patience would do. God is still writing my love story. but then some would say i need love to help ease the pain i'm having. i sometimes feel jealous of my friends who have someone to be with not to mention that i live with my uncle and not with my family. i, as an only child wants to experience those things too. the feeling to be loved. the feeling wherein you're parents are there with you and the feeling of someone who can be there at times when you need someone to lean on. i know i have friends. but they too have there own time.
sometimes i would think that it's better this way and grow old single than to experience being hurt by someone you love just because i have lupus. but my friends keep on reminding me that there's someone out there for me. it's not just his time to show. :)

anyways, because i liked your blog, i just want to share it to my lupie friends in facebook too, hope you won't mind.

thanks jessica. have a nice day. :)