Why and how do you get SLE?
Studies have shown that SLE can have genetic correlation, it means that if any of the autoimmune disease runs in the family, chances are there that you may get lupus. There are some triggering factors that can lead to lupus like sunlight, stress, psychological trauma, some drugs etc.
Can I try alternative medication ?
Every other form of medication should be taken only with the consultation of your rheumatologist. Plant based nutrition and dietary changes based on food can be a healthy choice. Reducing inflammatory and preservative food items which include, high oil or sugar items can be extremely helpful.
How long will it take to get into remission ?
There’s no definite fixed number of days or years one can say. Also depends on how acute your condition was during diagnosis. Majority of the patients go into remission with in 3–10 years of treatment. A healthy lifestyle should help us maintain our remission.
Is there a cure ?
There is no permanent cure for lupus but symptoms can be controlled and flare-ups can be minimised. With proper medications, healthy lifestyle, by avoiding sunlight exposure and stress reduction will help you to live a normal life.
Can I get married ?
Definitely. Marriage is choice you make to live with someone. Make sure your partner is aware of this. It should always be a planned pregnancy only when you are in remission period. Majority of the married lupus patients are leading a happy life with their healthy kids
Can a Lupus patient live a normal life?
Yes, a patient with SLE can live a close to normal life. Couple of precautions and must do are-
- Medications on time
- Avoid sunlight completely (umbrella sunscreen)Living in a clean and sanitized environment, it’s important we stay infection free. The reason is, any infection requires our immune system to fight it, in our case it ends up in an autoimmune response, thus tending to lead to a flare up. In case you have an infection or feel so, consult your doctor asap and start prescribed medications.
Should I tell my spouse?
Yes, definitely you should let your spouse know about your illness and the difficulties that you face in day to day life. Hiding out our disease can never be a solution since our visible symptoms (rash, fatigue, hair loss etc) and pain can’t be hidden as such. Also the physical, psychological and emotional support from partner can help a lupus patient to live a healthy normal life. In addition to this, there are chances of flare-ups during pregnancy, where certain medications need to be tapered only by your rheumatologist.
Lupus and Pregnancy?
Your disease should be under control or you should be in remission for upto six months once you decide to get pregnant. This should be discussed with your rheumatologist and only then taken forward.
Can I conceive?
Till recently it was a fact that lupus patients can’t have children. They had frequent miscarriages even. But as science grows and with recent advances in medical science, it is now proven that with proper monitoring by a rheumatologist, a lupus patient can conceive and can have a normal healthy child.
When can one get flare ups
Flare ups may occur when the disease is active in the patient’s body, flare ups may trigger due to sunlight exposure, infections, and mental tensions and in some during pregnancy.
How can I manage travel with Lupus?
There is no barriers for a lupus patients to travel rather take some precautions while traveling like;
- Avoid sunlight exposure.
- Use masks if you are using a public transport.
- Remember to carry enough medicines to last for an entire trip.
- Carry essential medicines that may be useful in inflammation, fever, cough, cold, vomiting etc.
- Try to avoid having food and water from outside while having a long journey
- Tell your travelling companions about what you may be able to do and what you may not.
Can I go to work with Lupus?
Yes , you can work with lupus.
- Tell your employer and coworkers about your present condition.
- Ask your employer for flexible working hours or work from home.
- Prefer jobs with less stress.
- Work cabin near to wash room and a parking spot near to office.
- Discuss with your employer about health insurance plans.
- Avoid outdoor jobs if it is not possible wear full sleeves, hat and apply sunscreen or work in shades.
- Take enough breaks.
Lupus and mental health
Firstly to accept a lifelong chronic illness like lupus can be mentally challenging. Other than this several unexpected situations can affect mental health like
- Financial burden due to long-term treatment.
- Change in physical appearance due to treatment (hair loss, weight gain) or lupus itself (visible rash).
- Some limitations in day to day activities.
- Living with pain can wear you down
- Lack of emotional support from family members and unaware of seriousness.
- Social isolation
- Uncertainty about the future can lead to anxiety.
- Mentally accepting the disease can improve physical wellbeing
I feel depressed, is it because of Lupus ?
- It maybe because of lupus. As lupus is a lifelong condition, most lupus patients are forced to take long-term medication. Financial burden and halt in career and education can contribute to depression. Social isolation and loneliness can also cause depression.
- Clinically, if you are a lupus patient with brain involvement you can have depression.
Is Lupus genetic? Does it run in the family?
- Lupus sometimes seems to run in families, which suggests the disease may be hereditary. Having the genes isn’t the whole story, though. The environment, sunlight, stress, and certain medicines may trigger symptoms in some people.
Should I avoid public places? Like Cinema halls or malls?
- Lupus is treated with Immunosuppressive drugs and this can increase the chance of catching infections. During the time of flare ups and post flare ups when the medication is high and knowing the fact that our immune systems keep firing in a hyperactive way, it makes it all the way more a reason to stay away from infections. Unnecessary intake of antibiotics can destroy the microbiomes and good bacteria required in the gut.
As a parent, I feel very hurt and bothered about my child being irritable and angry at me. Is there anything I can do to make him/her feel better ?
- Let your child understand that, there is a world beyond lupus. Lupus can be turned into a blessing in disguise. Make your child feel secure that they are loved, and wanted. The feeling of security and hope needs to be inculcated on a day to day basis. Let them know that there is room for every in this planet, and that no disease or problem can ever limit them and that the sky’s the limit. PS – Couples of hugs a day can keep the doctor away!
My colleague is a Lupus patient, there are times I feel he/she is fatigued and unwell. What can I do as a friend?
- Never treat us like a patient or with sympathy
- Ask us straightforwardly, if we are unwell or want to rest
- Support us small and minute ways, help us eat the right food at the right time.
- Empathize with us. No sympathy.
- Give us words of encouragement and support.
- Love us for who we are and not the disability. Don’t let Lupus define us.