Lupus Canada Advokit

If your partner has lupus

Often in a relationship where one partner has a chronic illness, we forget that the other person suffers too. While medical attention is paid to the person with lupus, life can change drastically for both partners.

Roles may be reversed - wage earning, household chores and family connections may fall to the caregiver. There are mood swings, medications and medical appointments to sort out, and a broad range of symptoms, fatigue on both sides.

Because a person with lupus often looks well, family and friends fail to understand or accept how serious the problem has become. Change is hard to cope with, and tension in the household can escalate as everyone tries to deal with the illness and the desire to get back to what used to be normal.

Excerpts from a letter written by a woman dealing with her husband's lupus illustrates one example of what happens: "For years, we suffered through the agony of not knowing what is wrong…the anger when the doctors can't find anything and the anger when the medical profession treats us as hypochondriacs. But still we hang in there...then the person shuts me out…'After all, you can't possibly understand what I am going through'...And this is when we discover who our friends are, and which family members have plenty to say, all of it critical…Our identities are lost. Everything we do and everywhere we go is wrapped up in pleasing the patient. We do these things willingly because we love the family member with lupus."*1

Not every situation will be the same, but there is no question that lupus calls for flexibility.

Some partners have difficulty expressing their feelings, their needs and concerns. A support group run by the local lupus organization may be a safe place to share some of these frustrations.

At the very least, in a group we realize that we are not alone and admit, if only to ourselves, that our feelings and reactions are normal.

Lupus organizations have a reading list of books dealing with specific concerns among partners, extended families and friends. It may be helpful to read and learn how to manage your emotions at these difficult times or how to relieve stressful situations for the person with lupus.

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*1 Excerpted from Lupus News, Lupus Foundation of America, Deborah Carlen, Vol.16.2