Lupus Stress on Patient and Family
I recently found an excellent article online about the stress that lupus causes for not only the lupus patient, but their support system as well. Lupus Patients in Relation to Family and Friends, written by Steven J. Schostal, M.D., begins with an overview of seven types of psychological stress that are common for someone with an acute and chronic illness like lupus.
- Lupus is a basic threat to the wholeness of the human being.
- Medical treatment requires the patient to trust strangers.
- The patient often suffers separation anxiety.
- The patient fears the loss of love and approval from friends and family.
- The patient may feel a sense of guilt and fear of punishment.
- Lupus causes a great deal of chronic and intermittent pain and fatigue.
- Lupus causes feelings of uncertainty about the future.
Dr. Schostal then discusses the kinds of reactions that he and other physicians has observed in friends and family members of the lupus patient. He has these suggestions for friends and family dealing with lupus.
First of all, lupus is a family problem and needs to be viewed as such. This requires that other adult family members and even children understand as much as possible about the disease. Regular contacts with the physician might be one route that one takes. The family member cannot share the disease itself or understand it exactly in the same way as the patient, but such understanding and sharing the consequences of the disease must be maximized.
My wife and I have had many discussions about this very topic. For many years, my wife tried to hide or downplay her lupus, even to her parents and siblings. She has gotten better at talking about her illness with friends and loved ones, but we still have a hard time discussing the situation with our children. We do our best, but with an eight year-old and a three year-old, it’s a difficult topic to talk about.
Secondly, and I will underline this, there is not single healthy response to lupus and a lupus flare-up. The trick is to find the best response at a particular time — sympathy when the symtomatology is at its worst; support during times of fear and crisis; a kick in the behind during the times of patient’s self-pity. I suppose healthy responses are those that fit the situation. Psychiatrists are relatively immoral people. I frequently tell my patients when they ask, “Well, what ought I to do?” or, “What should I do? What’s right, what’s wrong?” that these are determined not by any system of things that is written down. There are no “Ten Commandments” — but rather by what works for them and what works for their families, and the hard part is figuring that out.
No kidding it’s hard to figure out. It’s almost impossible when you include the fact that the friend or family member is also effected emotionally by the lupus patient’s illness. I do my best to anticipate the best response for a particular situation, but sometimes I feel so frustrated and helpless that it all comes across as something other than I intend.
Thirdly, and most important, is open lines of communication. The patient needs to feel comfortable telling other family members how they feel, what is wrong at a given time, and what they think might be helpful or what the family might be doing that is not so helpful … I cannot stress enough that the family also has to be willing to talk to the involved person about the same issues; how they feel, and what the person is doing that is bothering them, or what about the person you know is helpful for the family in dealing with the disease. It’s relatively easy, for example, for a patient to say, “Thanks, you’re all so good to me,” but there are times that the patient has to express the less positive feelings like, “It makes me angry every time I talk about how I feel, you change the subject.” For the family member, it’s relatively easy to say, “I feel awful watching you when you’re sick.” It’s much harder but perhaps even more important to be able to say, “This time I find myself angry with you for being sick and looking depressed, and I don’t even understand why,” or “Is it really that bad? Just last week you were doing fine, and this time you’re really getting to me.” The disease, for heaven’s sake, is a family problem and, as such, much easier to deal with given open lines of communication.
Lupus is so hard to understand, and that makes it even more difficult to discuss. I know for myself it really comes down to fear. My wife’s lupus is severe and life-threatening, but it may continue to be controlled with medication. We just don’t know what’s going to happen, other than that it will continue to be a problem that we deal with every day.
I hope that this site will allow some individuals, patients or loved ones, to discuss their feelings and frustrations, and to share what has made a difference. An illness like lupus is not something that should be faced alone.
Often I find myself angry. DH appears angry. I cannot understand why he doesn’t understand that when I am tired, I have to take a nap. When I am sick, he might as well either sit up and help or shut me out and go to bed. He usually chooses the latter, which hurts even more.
The day I told him I had lupus, he called me a liar. It has taken a number of years to get beyond that one. He believes it now but I don’t think he believes the symptoms are so bad even when he is there when I am at my sickest. He is there when the audible thermometer is ticking off the 101 to 103 degree temperature. He knows I am sick yet something in him refuses to allow him to show me just the tiniest bit of understanding and compassion. Instead, he often comes home complaining about what hasn’t been done instead of focusing on something I did do. Or, he comes home ssniping about everything until he causes a fight that puts us on opposite ends of the house for yet another night, which of course ups the stress anty and makes me even sicker. I don’t understand and it is driving me mad. I am the one with the disease yet he can’t bother with a little bit of kindness or a few minutes of understanding. This isn’t as if I am asking for the Holy Grail or anything.
BTW I printed the Spoon Theory out on computer paper, stapled it in the corner so it would stay together. I tucked it in the fold between his wallet folded in half with a note asking him to read it for me. He left it sitting in the valet dish for two years until finally throwing it out – still unread. Now that hurt more than any words or actions. Not only does he appear to not want to show comfort or care but he doesn’t want to learn anything about the disease either.
I am beginning to wonder where we go from here.
Paisley,
I would like to think that I’m always understanding of how my wife is feeling, but I know that is not the case. Some days are very hard for me. Lupus is so difficult to understand, and your husband may not know where to begin.
I learned a great deal by taking notes at my wife’s doctor visits. We have a four hour drive to UCLA once every six weeks or so to visit her rheumatologist, and we usually take that time to discuss her symptoms and the situation. This usually ends up in some type of an argument, but we’ve learned that this comes from our own frustration with the illness and not with each other.
I wish I had more to offer, but I still struggle with being able to say the right thing at the right time. It’s a very difficult illness to understand.
Jeff: The fact you are trying to understand makes me a bit envious of your wife. She is lucky to have someone like you who does take an interest and wants to understand. DH simply shuts down on me. Before an argument ensues and after it is over he tends to go into “hermit cave mode” whereas I put up this wall in an attempt to keep his actions and words from hurting so much. It’s not healthy for either us but I have no idea how to get him to open up to me. He has always been one of those men that are the strong silent type. It is almost impossible to break that armor shield he puts up between us. It is all I can do to brace myself from the onslaught of feuds between us.
The saddest part is that when we aren’t arguing, when things are going good, it’s nice. My lupus may flare but it doesn’t generally get completely out of control to the point where it totally incapacitates me; however, when we have bad times it is all I can do (sometimes I fail) not to lose it to the point where I collapse under the weight of the harshness between us and the flare’s ability to butt into my life making it worse. Things were difficult enough before lupus. I mean we had finally got to a point where he was getting used to the idea that my vision was fading and there was nothing that could stop it. Then, this little gem dropped in my lap and it has been as if my world blew apart all over again. It is even more difficult because of his juvenile diabetes. He is moody and often his mood is contingent on his diabetic sugar levels. I don’t always catch that his irritability is the result of his sugar levels. All I see is the man I love ripping at the fabric of our marriage. I hope he will come around soon then it will be easier to tell the irritable him from his health and irritable because he had a bad day at work without the Mr. Hyde showing up instead of Dr. Jekyll after he stressed over my health condition. I never know which man is coming home each evening.
He actually does take me to my doctor appointments. He has been in the examining room once when I was in a flare. The nurse set it up so he could hear the doctor discussing lupus to make it more real for him and give him the opportunity to ask questions. It helped but only to a certain degree.
We have some friends who were dealing with some of the effects of diabetes. Once his diabetes was under control, they were able to work some things out and are much happier now.
I wish I could be more help. I know how hard it is to talk about serious issues with your spouse.
Paisley, the only thing I can tell you is to be patient with him. He’s probably fearful because of your Lupus and like Jeff, probably helpless. And because he’s the strong, silent type, he probably doesn’t like to feel like that and doesn’t know what to do about it. A lot of women have this problem with their husbands shutting them out when they need them the most because they’re afraid. Don’t give up on him. Keep trying to find ways to make your communication better.
Here are some things you might want to try to get him to feel more in control:
- Don’t tell him all your fears about Lupus from the beginning. It might scare him. When he’s more comfortable with it, start telling him.
- Try to be positive around him and have a smile, even when you’re at your worst health-wise. For me, I’ve noticed that if I’m in a good mood, even when I’m at my tiredest and worst health-wise, and even if my husband is frustrated at Lupus, it helps him know that I’m okay.
- Let him know how he can help. When my husband knows that I need him to sit with me for a little bit or give me a hug and he sees the difference it makes to me, he feels like he did something huge (which he did).
- Thank him for the little things that he does and tell him how much you appreciate what he does for you. When he feels like what he does is helping, it’ll make him feel more in control.
- When he does get moody, try to make him feel better and avoid talking about Lupus then
- When he’s in a good mood, talk to him about how it makes you feel when he shuts you out, (and try not to make it feel like you’re blaming him)… and ask *him* how you can make it happen less often… also ask *him* if there’s anything you can do to make life better in general (except things you can’t do physically).
I don’t know if what I said makes sense (it did in my head), and I hope it helps.
I hope things go better with you and your hubby.