Role of Family Support in Fighting Against S.L.E. Disease

Author: Sandy

Posted On: January 23, 2014

Lupus is one chronic disease that suddenly takes the total control of one’s life. Not only it shatters the life but also affects others’ life around. When it’s your family member or a friend living with lupus, engrave one thing in you mind… Lupus has made a room for itself in your loved one’s body and going to influence every relation she has.

It’s complex to identify the symptoms of this illness, hence one may not be aware how to handle the situation, how to support your loved ones. Sometimes Lupus invades one’s very established career life. Sometimes it ruins everything that comes in its way like some Tsunami. You can do your best to hold sand tight in your hand but when you open – it’s empty… The sand has slipped away. Living with Lupus is something similar. It doesn’t effect one, but injures a whole family. Every relation tied to the Lupie suffer simultaneously.

It is pretty frustrating ; you may fall weak and thus would need unconditional emotional support to cope up with it. Here we would discuss some ways to support and help you fight SLE better ;

a. Candid Communication Regarding S.L.E. Disease and its Complications

The strength of the relationship lies in honesty. Hence, true and honest conversation regarding the Lupus would help you to preserve the bond.. Generally, people tend to be secretive about the chronic illness thinking not to hurt others.

Avoiding talking about S.L.E. Disease, may not go as you have planned. You need to share your feelings, emotions and pain. It is really important for the person having Systemic Lupus Erythematosus to share how he feels so that he doesn’t suffocate with the pain. As it says in India ‘Dard baatne se, kam hota hai’ which means sharing lessens pain. Often it is difficult for an individual to talk about S.L.E. complications. Even your anger, frustration, worry  need to be channeled out.

For the one’s listening to a Lupus warrior, have some compassion and patience.   If it is difficult to open up, take the help of counselors or professionals who may guide you to initiate your talk

 b. Learning Lupus as much as You Can

Psychologists in Los Angeles suggest, to acquire as much Lupus knowledge  as possible. It would help you understand the situation, mental status, trauma or even the physical pain your loved one is facing. But why is it SO IMPORTANT? The answer for that would be; S.L.E. symptoms as well as its effects differ from person to person. More you are familiar with Lupus, better you would be able to extend your hand of love, compassion, support towards your loved ones. So, better start with the Systemic Lupus Erythematosus definition, from today only.

c. Inquire the Desires

Sometime, you feel you know your partner or your family member with lupus so much that you may not seize it to be essential ask at least. Lupus has got different effects hence, it would be wrong to presume anything. To be certain of it, the best thing to be done is to ASK.

It would reflect your care and concern. And one could sense that you want to help. But be careful doing so, don’t underestimate one just for Lupus. At least ask first rather than doing it without prior knowledge.


d. Acknowledge the Changes that Lupus Brings Along

One is moved away from her daily life routine, her usual activities when living with S.L.E. That incapability may be a major one. Being partner, you may have to shoulder her responsibilities. It is acceptable that those changes of shifting of responsibilities and activities would be difficult, but you ought to prep up for it. And keep your eyes open for the signs of Lupus flare-up.

You need to accept those hardships as you know it would be on your way soon, affecting your relationship. Give courage to your loved one to let go of the past and relish of the moments coming and live them to the most.

e. Don’t Forget to Say,”I Know You Can Do it”

When the confidence level of an individual living with Lupus goes down, you need to motivate him/her. Nothing compares to the inner-strength acquired when one sees you are having the confidence in him or her. Don’t let one feel low. If you sense it, then do something to divert mind, something funny. Something ROMANTIC is highly preferred.

f. Refuel Yourself

It’s true that you are not the one with S.L.E. disease; but you are playing the role of custodian.  You need to make your warrior feel better. But again, you too need to take a break from that role, give some time to re-energize yourself. Take care of yourself. When you feel guilty about the thought of not being in your caring role, you should understand you need some ‘ME-TIME’ to take better care of your partner. It is not running away. It’s just imperative for both of you.

There are small yet pretty effective ways how you could focus on yourself like visiting friends, attending art exhibition, a small walk down the road or even reading a book. Do whatever relaxes you.

g. Seek Support for Yourself

There is a wide-range of feelings from fear to anger and frustration, that may haunt you, which is obvious. You are not fighting Lupus, still you have your own share of stress and anxiety. So, both you and your partner are fighting S.L.E. Even you need to get those negative feelings drained out of yourself. Search out for those people who are in same situation and share your feelings, situations. Get some support. You may come to a certain point where you would realize that you are not the only one struggling.

Outside India there are many groups for Lupus affected people, where the family members can also join. Search for the group within your reach.

Remember, your partner needs your support, empathy and understanding. And to support him/her in this painful fight you need to take care of yourself too. I have shares just a few ideas, but you can have some great relaxing techniques and support system for yourself. Don’t forget to share them with Fight S.L.E.


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