Q: I was diagnosed with lupus three years ago and, since then, have not felt like doing much – including keeping up with my full-time job, tending to my 5-year-old son, cleaning house or having sex with my husband. My husband criticizes me for being lazy and losing interest in him. Is it typical to feel so miserable with this disease? Is there anything I can do to feel better or to, at least, let my husband know I'm not just lazy?
A: Diagnosing lupus doesn't mean identifying all side effects (and some aren't easy to diagnose). Lupus-related conditions vary by individuals, but believe it or not, your situation isn't unusual. I have observed a lot of people with lupus who occasionally experience the pattern of fatigue, depressed mood, stress, family conflict and loss of sexual interest. Virtually all people with the disease – even those with milder forms – experience fatigue or loss of energy.
Fortunately, there are several steps you can take to improve your life.
Talk to your doctor. Tell your doctor about your entire situation, including your fatigue and sexual disinterest. Some of it may be due to treatment side effects and may be medically correctable.
Follow your treatment plan. Often, the best way to minimize your fatigue is to get your disease under better control. That means taking medications as your doctor prescribes, doing prescribed exercises and practicing energy-conserving techniques.
Ask for help. Allow yourself to ask for help with responsibilities. For example, at home, get a babysitter to occasionally help with your son, hire a housekeeper or someone else to cook. At work, explain your fatigue to your boss and request help with some of your duties.
Seek counseling. Don't hesitate to get help from a psychiatrist, psychologist or other counseling professional who is trained to help people cope with depression or marital disharmony.
Involve your husband. Ask for help clearly, and then precisely explain what you need done. Ask your husband to get your medicines for you. If possible, have him accompany you to doctors' appointments, attend a lupus self-help course with you or read lupus materials. By treating lupus as a common enemy faced by your marital "team," you can achieve greater intimacy with your husband.
Plan for intimate activities. Take pain-relief medication immediately before those activities. Use stretching and/or a warm bath to relax muscles. Learn different sexual/touching techniques that are less fatiguing.
Take time for yourself. Finally, take time for rest and for enjoyable activities as well. Avoid the pitfalls of false martyrdom, self-pity, escapism, guilt, anger or overeating.
Accept what you can't change. You must accept that you will generally have less energy than you had before lupus. Life can be most rewarding when we concentrate on a few of the gifts that life provides us rather than by grasping for more.
Richard Maisiak, PhD, MSPH, Psychologist and Epidemiologist
It's Lupus, Not Laziness
|
Joanne Lundy
27 May 2010, 09:38
|
| Well I have been diagnosed; LUPUS now what? I have been on steroids and that is the only thing that allows me some normalcy. I have to take alot of pain med also. They have stared me on a new drug to see if they can stablize me. The new drug is Hydroxychlor 200mg once a day. I have a strong faith with the Lord and I know he will not give me more than I can handle.....he sure has alot more confidence in me then I do myself. |
|
confused.
20 Dec 2009, 20:48
|
| I was diagnosed with lupus since 12 years of age, and currrently in remission for about 3 years now. It seems like I havent been so lazy lately because of the amount of work and school I have. Sometimes, I do have mood swings but its because I get angrey at my boyfriend, however, he thinks its just the symptom of lupus. How do I tell him that it is because I am mad at him !. Or is it actually me? Im confused. |
|
martha louise cohea
28 Nov 2009, 11:29
|
| I have had lupus for 16 years it use to go into remission for a few months,but I have not had a break in the last 3 or 4 years.I HAVE GOT NEW SYSTOMS,SUCH AS BUMPS ON MY scalp ,WHICH IS SCALEY AND I can'get relief no matter what i have tried. I stay so tired untill I CAN NOT COOK,GROCERY SHOP OR DO HOUSE work OF ANY SORT,NOT EVEN BENDING TO PUT DISHES IN THE DISHWASHER. I HAVE TO TAKE PAIN MEDS. BEFORE I bathe or go to the Dr.s office.If I ride for a couple of hours I have to lay down in the seat in about 45 minutes and if I TAKE THAT TRIP TO SEE FAMILY I always seem to have to sleep all day the next day.I feel like my husband thinks I am just lazy and lately I have just been able to take 2or3 naps over a period of 24 hours. CAN YOU HELP ME? |
|
mary dye
03 Nov 2009, 16:48
|
| I have had Lupus for 20 plus years and just recentlyy have become diabled. My question is it common for lupus to attack joints in the way my lupus has. I have had an an elbow replacement,but failed(I have no elbow),I have had 3 rotator cuff repairs that all have failed and now need a reverse shoulder replacement,I have AVN also in both hips,knees,shoulders and have had debriedment for AVN in my ankle. Is this a "normal" prgression of lupus. I'm greatful my kidneys,lungs and heart are O.K. |
|
Hopeless
09 Oct 2009, 08:52
|
| What do you do when your family gives up on you and you have no friends to turn to? |
|
nancy ayala
25 Sep 2009, 11:34
|
| How do you treat lupus and how many times do you have to take your blood tests? |
|
Bettyborrow nds
31 Jul 2009, 11:53
|
| i just fund out i have lupus and do not no what to do about it. |
|
Charles Kroft
15 Apr 2009, 10:52
|
| My wife and I both have arthritis and we have difficulty finding positions for sexual intercouse that does not cause joint pain in one or both of us. Do you have any studies or suggestions, tht would offer alternative positions that would help us have less or no pain during or after sexual intercourse. Any help would be appreciated |
Thanks,
Anne