Table of Contents

• Understand Lupus for Yourself
• Set the Stage to Talk Openly
  • Timing is Everything
  • Set the Mood
• Making Lupus Understandable
• Address the Fears
• Treatment for Lupus
• Additional Support System
• Summary

When you have been diagnosed with lupus, your entire life can begin to change in a flash. You begin to make rheumatologist appointments, start a healthy diet, research all the right supplements, formulate a treatment plan, and even arrange your schedule a little differently.

What we fail to realize often is that this not only changes life for you but lupus affects the lives around you too. If you are married, your partner or spouse may naturally want to step up and will be willing to help but he might be a little perplexed on how.

So how do you explain lupus to your husband so you don’t feel like you are battling this chronic illness alone?

Understand Lupus for Yourself

It’s important to remember that sharing your diagnosis can alleviate a burden instead of braving it all alone. Many lupus sufferers, as well as many others with autoimmune disease, feel guilty when it comes to sharing their lupus diagnosis or talking openly about it. They can feel that including someone, can mean they may begin to feel sorry for them, they may not understand, or even put them in a possible caretaker position. That’s why it’s important to prepare yourself first before you decide when, where, and how you will share the news.

Keep in mind that you may need time to process the physical and emotional ramifications that people with lupus deal with. Receiving a chronic illness diagnosis can even jump-start you straight into the stages of grief: Denial and isolation, Anger, Bargaining, Depression, and finally Acceptance. It’s possible that when you share your news, others may go through these stages as well. That’s why it’s important to understand lupus yourself first before you include your support system and anticipate your future needs so you can be fully prepared for the conversation.

Set the Stage to Talk Openly

Timing is Everything

After giving yourself some time to understand what you’re going to need and what you may have to go through in the near future, it’s time to sit your husband down and have that much-needed conversation. Remember that timing is very essential to this process.

For example, sharing this kind of news right before your husband heads to work can be less than ideal. We all need to be at our best when we perform at our jobs and he’s likely to be distracted if he’s just learned that his spouse and his world are all about to change. Right before bed might not be the best time either because it’s hard to sleep when you find out you may have to make changes at any given moment.

The best recommended time is after dinner when things are calm, the family is fed, and work is done for the day. This gives him time to fully focus on you and your needs.

Set the Mood

Another important factor is your husband’s mood. If he’s had a rough day, received bad news, or happens to have extreme fatigue due to lack of sleep from the night before, it might not be the best time to talk about the support you need from him when he may feel he needs to be supported a little extra that day.

Most people have far better communication skills when they are rested and joyful. Find a day when he’s in a decent mood and can process this news with an open mind and receiving heart. The better his mood is, the better the chances are that you can work through the next steps together effectively.

Making Lupus Understandable

Now that you’ve shared your lupus diagnosis with your husband, it’s most likely that he will have questions if he hasn’t dealt with lupus from a friend or family member previously. This is where education on your end can be extremely valuable.

First, you will want to share what you have learned firsthand and perhaps from websites like www.livingwithchronicillness.com, pamphlets, or booklets from your healthcare provider.

In addition, you can also work to provide him with as much information about available online resources regarding lupus. The Lupus Foundation of America also has great resources as well even including ways to become an advocate. This will all help him during the early process.

Address the Fears

Hearing the words systemic lupus erythematosus (SLE) almost sounds like something out of a horror film, so addressing the fears that come with it is an important step. For example, lupus is a chronic illness so this means a life-long commitment is required for treatments and care for all who are involved. That can be overwhelming for many people with lupus and for their husbands as well.

One of the most common fears among women with lupus is how to combat some of the harsh symptoms presented with this disease and how it may affect their daily lives. Some of the symptoms of lupus are:

• Rash
• Chest pain
• Hair Loss
• Kidney problems
• Fatigue
• Fever
• Joint pain
• Mouth Ulcers
• Sensitivity to the sunlight

Although many of these symptoms may be uncomfortable, others can be life-threatening. For example, if kidney issues aren’t dealt with early on, this can lead to kidney failure and can be fatal. Lupus may begin to affect your internal organs with very little warning.

This is why it’s important to address the seriousness that lupus presents to the people who love you. By going over the distressful issues chronic illness can present in both of your lives, you know when you both should go see your doctor, contact a qualified health physician and when you can both take other forms of action to lead productive lives.

Although you may experience only some of these symptoms, being prepared with your partner is crucial.

Treatment for Lupus

Anyone dealing with a chronic condition should always be prepared for lupus symptoms and for lupus flares. It’s very well known that there is no cure for lupus, so addressing additional care far in advance can help start to feel hopeful for a very fulfilling life.

Lupus treatment can vary from day to day and may change from one flare to the next. You may feel guilty for asking for help but having a great partner in life means you are not alone in this. Along with over a million Americans and people worldwide, people understand more about lupus treatment today than they ever have before.

One of the most common experiences you can have with lupus is the inability to get comfortable due to the pain in your joints. Your husband can make sure you are comfortable by bringing you an extra pillow, providing a heating pad, or bringing you your medicine prescribed by a medical professional like (Benlysta, Rheumatrex, Plaquenil, etc.) to help ease your symptoms. You can also look into alternative treatments like cryotherapy or additional vitamins.

Others who deal with lupus may feel sad or sink into depression. Your husband can help you through this by consoling you with a cuddle, being a great listener when you need to talk about what you are dealing with or he may suggest taking a walk for the two of you to get out of the house. For those days where extreme lupus fatigue are taking over, we suggest these helpful tips to help combat it: How to beat lupus fatigue.

Additional Support System

When you live with lupus, the struggles can feel endless some days. This is why having an additional support group can be very important to both you and your husband. Once you both understand what your future will be like, all fears have been addressed, and you both know the treatments you need consistently, it’s even more helpful to get support from others. This can mean family support, nearby friends, or even local support groups. Having the extra support is great for those days when your husband is unavailable, out of town, or you may need the extra guidance. When you live with lupus, it’s always great to have additional resources outside the home to help you know you’re not alone in your struggles.

Summary

When you have a chronic illness like lupus, it can feel like the end of the world. However, it’s important to remember that lupus support comes in many ways. Remember, lupus is not like having a signed death warrant. The symptoms can be managed and put into remission and you can still live a happy and productive life. If you’re looking for more information about lupus or the forms of lupus, you can contact us as an additional community of support.